WorldWideScience

Sample records for cancer registries 1973-2000

  1. What are cancer registries

    Directory of Open Access Journals (Sweden)

    Miladinov-Mikov Marica

    2004-01-01

    Full Text Available Introduction Population-based cancer registries attempt to collect, process, analyze, store and interpret data on persons with cancer in a certain population (most frequently a geographical area. Hospital-based cancer registries register all cases in a given hospital, usually without knowledge of the background population; the emphasis is to serve the needs of the hospital administration, the hospital cancer program, and, above all, the individual patient. History of Cancer Registries Registration of persons suffering from cancer is a slow process. Around the year 1900, England and Germany demanded improvement of statistical investigation on spread of cancer in population in order to undertake etiological researches. The oldest example of a modern cancer registry is that in Hamburg. Today there are more than 200 population-based cancer registries, but they cover only 5% of the world population, mainly in developed countries of the world. Cancer registry of Vojvodina Cancer registry of Vojvodina was established in 1966; it is a member of International Agency for Research on Cancer (IARC and it is still the only cancer registry from our country whose data are cited in scientific monographs of IARC. The main purpose of cancer registries is to produce statistics on the occurrence of cancer in a defined populatin and to provide a framework for assessing and controlling the impact of cancer on the community. Cancer registries are essential parts of any rational program of cancer control. Their data can be used in a wide variety of areas of cancer control, ranging from etiological research in epidemiology, through primary and secondary prevention to health-care planning and patient care, so benefiting both the individual and society.

  2. Breast and Colon Cancer Family Registries

    Science.gov (United States)

    The Breast Cancer Family Registry and the Colon Cancer Family Registry were established by the National Cancer Institute as a resource for investigators to use in conducting studies on the genetics and molecular epidemiology of breast and colon cancer.

  3. New registry: National Cancer Patient Registry--Colorectal Cancer.

    Science.gov (United States)

    Wendy, L; Radzi, M

    2008-09-01

    Colorectal cancer is emerging as one of the commonest cancers in Malaysia. Data on colorectal cancer from the National Cancer Registry is very limited. Comprehensive information on all aspects of colorectal cancer, including demographic details, pathology and treatment outcome are needed as the management of colorectal cancer has evolved rapidly over the years involving several disciplines including gastroenterology, surgery, radiology, pathology and oncology. This registry will be an important source of information that can help the development of guidelines to improve colorectal cancer care relevant to this country. The database will initially recruit all colorectal cancer cases from eight hospitals. The data will be stored on a customized web-based case report form. The database has begun collecting data from 1 October 2007 and will report on its first year findings at the end of 2008.

  4. Evaluation of institutional cancer registries in Colombia.

    Science.gov (United States)

    Cuervo, L G; Roca, S; Rodríguez, M N; Stein, J; Izquierdo, J; Trujillo, A; Mora, M

    1999-09-01

    The four primary objectives of this descriptive study were to: 1) design a quality-measurement instrument for institutional cancer registries (ICRs), 2) evaluate the existing ICRs in Colombia with the designed instrument, 3) categorize the different registries according to their quality and prioritize efforts that will efficiently promote better registries with the limited resources available, and 4) determine the institution with the greatest likelihood of successfully establishing Colombia's second population-based cancer registry. In 1990 the National Cancer Institute of Colombia developed 13 institution-based cancer registries in different Colombian cities in order to promote the collection of data from a large group of cancer diagnostic and treatment centers. During the first half of 1997, this evaluation reviewed 12 registries; one of the original 13 no longer existed. All of the Colombian institutions (hospitals) that maintain institution-based cancer registries were included in the study. At each institution, a brief survey was administered to the hospital director, the registry coordinator, and the registrar (data manager). Researchers investigated the institutions by looking at six domains that are in standard use internationally. Within each domain, questions were developed and selected through the Delphi method. Each domain and each question were assigned weights through a consensus process. In most cases, two interviewers went to each site to collect the information. The university hospitals in Cali, Pereira, and Medellín had substantially higher scores, reflecting a good level of performance. Four of the 12 institutions had almost no cancer registry work going on. Five of the 12 hospital directors considered that the information provided by the cancer registries influenced their administrative decisions. Three of the registries had patient survival data. Four of the institutions allocated specific resources to operate their cancer registries; in the

  5. Linking Medicare, Medicaid, and Cancer Registry Data...

    Data.gov (United States)

    U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...

  6. Veterans Affairs Central Cancer Registry (VACCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local...

  7. PCCR: Pancreatic Cancer Collaborative Registry.

    Science.gov (United States)

    Sherman, Simon; Shats, Oleg; Ketcham, Marsha A; Anderson, Michelle A; Whitcomb, David C; Lynch, Henry T; Ghiorzo, Paola; Rubinstein, Wendy S; Sasson, Aaron R; Grizzle, William E; Haynatzki, Gleb; Feng, Jianmin; Sherman, Alexander; Kinarsky, Leo; Brand, Randall E

    2011-01-01

    The Pancreatic Cancer Collaborative Registry (PCCR) is a multi-institutional web-based system aimed to collect a variety of data on pancreatic cancer patients and high-risk subjects in a standard and efficient way. The PCCR was initiated by a group of experts in medical oncology, gastroenterology, genetics, pathology, epidemiology, nutrition, and computer science with the goal of facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention and treatment strategies against pancreatic cancer. The PCCR is a multi-tier web application that utilizes Java/JSP technology and has Oracle 10 g database as a back-end. The PCCR uses a "confederation model" that encourages participation of any interested center, irrespective of its size or location. The PCCR utilizes a standardized approach to data collection and reporting, and uses extensive validation procedures to prevent entering erroneous data. The PCCR controlled vocabulary is harmonized with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT). The PCCR questionnaire has accommodated standards accepted in cancer research and healthcare. Currently, seven cancer centers in the USA, as well as one center in Italy are participating in the PCCR. At present, the PCCR database contains data on more than 2,700 subjects (PC patients and individuals at high risk of getting this disease). The PCCR has been certified by the NCI Center for Biomedical Informatics and Information Technology as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product. The PCCR provides a foundation for collaborative PC research. It has all the necessary prerequisites for subsequent evolution of the developed infrastructure from simply gathering PC-related data into a biomedical computing platform vital for successful PC studies, care and treatment. Studies utilizing data collected in the PCCR may engender new approaches

  8. Encouraging Health Information Management Graduates to Pursue Cancer Registry Careers.

    Science.gov (United States)

    Peterson, Jennifer

    2016-01-01

    The cancer registry profession has grown dramatically since its inception in 1926. Certified tumor registrars (CTRs) have become an integral part of the cancer care team by providing quality cancer data for research, statistical purposes, public health, and cancer control. In addition, CTRs have been found to be valuable in other cancer and health-related fields. Based on the need for high-quality, accurate data, the National Cancer Registrars Association (NCRA), the certification body for CTRs, has increased the educational requirement for eligibility for the CTR certification exam. This has resulted in fewer individuals who are able to meet the requirements for CTR certification. In addition, the existing cancer registry workforce is, on average, older than other allied health professions, and therefore will face an increasing number of retirements in the next few years. The high demand for CTRs, the decreased pool of CTR-eligible applicants, and the aging cancer registry workforce has resulted in an existing shortage that will only get worse as the population ages and the incidence of cancer increases. Health information management (HIM) students are well suited to pursuing further training in the cancer registry field and gaining the CTR credential. HIM students or new graduates have the needed skill set and education to pursue a cancer registry career. There are many avenues HIM educational programs can take to encourage students to pursue CTR certification and a cancer registry career. Including cancer registry functions in courses throughout the HIM curriculum, bringing in cancer registry speakers, encouraging networking, and promoting the cancer registry field and profession in general are just a few of the methods that HIM programs can use to raise awareness of and promote a cancer registry career to their students. Illinois State University has used these methods and has found them to be successful in encouraging a percentage of their graduates to pursue

  9. Thyroid Cancer and Tumor Collaborative Registry (TCCR).

    Science.gov (United States)

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC. PMID:27168721

  10. Thyroid Cancer and Tumor Collaborative Registry (TCCR).

    Science.gov (United States)

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.

  11. The role of cancer registries in cancer control.

    Science.gov (United States)

    Parkin, Donald Maxwell

    2008-04-01

    Cancer control aims to reduce the incidence, morbidity, and mortality of cancer and to improve the quality of life of cancer patients through the systematic implementation of evidence-based interventions in prevention, early diagnosis, treatment, and palliative care. In the context of a national cancer control program (NCCP), a cancer surveillance program (CSP), built around a population-based cancer registry, is an essential element. Data on the size and evolution of the cancer burden in the population are essential to evaluation of the current situation, to setting objectives for cancer control, and defining priorities. Cancer data are essential in monitoring the progress of the implementation of an NCCP, as well as providing an evaluation of the many individual cancer control activities. In the context of an NCCP, the CSP should provide a focus of epidemiological expertise, not only for providing statistical data on incidence, mortality, stage distribution, treatment patterns, and survival but also for conducting studies into the important causes of cancer in the local situation, and for providing information about the prevalence of exposure to these factors in the population. Cancer surveillance via the population-based registry therefore plays a crucial role in formulating cancer control plans, as well as in monitoring their success. PMID:18463952

  12. Prostate Cancer Registries: Current Status and Future Directions

    OpenAIRE

    Gandaglia, G; Bray, F.; Cooperberg, MR; Karnes, RJ; Leveridge, MJ; Moretti, K; Murphy, DG; Penson, DF; Miller, DC

    2016-01-01

    © 2015 European Association of Urology. Context: Disease-specific registries that enroll a considerable number of patients play a major role in prostate cancer (PCa) research. Objective: To evaluate available registries, describe their strengths and limitations, and discuss the potential future role of PCa registries in outcomes research. Evidence acquisition: We performed a literature review of the Medline, Embase, and Web of Science databases. The search strategy included the terms prostate...

  13. Report of incidence and mortality in China cancer registries, 2009

    Institute of Scientific and Technical Information of China (English)

    Wanqing Chen; Rongshou Zheng; Siwei Zhang; Ping Zhao; Guanglin Li; Lingyou Wu; Jie He

    2013-01-01

    The National Central Cancer Registry (NCCR) collected cancer registration data in 2009 from local cancer registries in 2012,and analyzed to describe cancer incidence and mortality in China.Methods.:On basis of the criteria of data quality from NCCR,data subrnitted from 104 registries were checked and evaluated.There were 72 registries' data qualified and accepted for cancer registry annual report in 2012.Descriptive analysis included incidence and mortality stratified by area (urban/rural),sex,age group and cancer site.The top 10 common cancers in different groups,proportion and cumulative rates were also calculated.Chinese population census in 1982 and Segi's population were used for age-standardized incidence/mortality rates.Results:All 72 cancer registries covered a total of 85,470,522 population (57,489,009 in urban and 27,981,513 in rural areas).The total new cancer incident cases and cancer deaths were 244,366 and 154,310,respectively.The morphology verified cases accounted for 67.23%,and 3.14% of incident cases only had information from death certifications.The crude incidence rate in Chinese cancer registration areas was 285.91/100,000(males 317.97/100,000,females 253.09/100,000),age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) were 146.87/100,000 and 191.72/100,000 with the cumulative incidence rate (0-74 age years old) of 22.08%.The cancer incidence and ASIRC were 303.39/100,000 and 150.31/100,000 in urban areas whereas in rural areas,they were 249.98/100,000 and 139.68/100,000,respectively.The cancer mortality in Chinese cancer regist-ation areas was 180.54/100,000 (224.20/100,000 in males and 135.85/100,000 in females),age-standardized umortality rates by Chinese standard population (ASMRC) and by world standard population (ASMRW) were 85.06/100,000 and 115.65/100,000,and the cumulative incidence rate (0-74 age years old) was 12.94%.The cancer mortality and ASMRC were 181

  14. SURVIVAL ANALYSIS OF CANCER CASES FROM QIDONG CANCER REGISTRY

    Institute of Scientific and Technical Information of China (English)

    CHEN Jian-guo; Sankaranarayanan R; SHEN Zhuo-cai; Black RJ; YAO Hong-yu; LI Wen-guang; Parkin DM

    1999-01-01

    Objective: 16,922 patients with cancers from 15 sites of Qidong population-based cancer registry in the period of 1982-1991 were analyzed for evaluation of cancer survival as well as different cancer control measures.Methods: Observed survival rate (OS) was computed by the Kaplan-Meier method using EGRET statistical software package. Relative survival (RS) which is the ratio of the OS to the expected rate was calculated by using Qidong life table with respect to sex, age and calendar period of observation. Results: The five-year OS for the 5 leading sites of cancers, liver, stomach, lung,oesophagus, and rectum were 1.8%, 11.6%, 3.0% 3.3%,and 19.9%, respectively. The five-year RS for the 5 sites were 1.9%, 14.0%, 3.6%, 4.2%, and 23.7%, respectively,in which, 1.7%, 14.8%, 3.4%, 4.2%, and 26.0% for males, and 2.7%, 12.7%, 4.1%, 4.0%, and 22.0% for females, respectively. Female patients with breast cancer and cervix cancer had 5-year RS of 54.6% and 33.0%.Conclusion: Cancer survival rates for all sites are poor,in which that of the liver is the lowest, while that of the breast, the highest. The survivals of cancers for all sites,especially for breast, cervix, and leukemia are seen to be lower than those of European countries except for oesophagus, pancreas and lung cancer which do not achieve improved survival both in developing and developed countries. There will be a long way to improve the total cancer survival, as well as the cancer treatment in the developing countries.

  15. Report of Incidence and Mortality in China Cancer Registries, 2008

    Institute of Scientific and Technical Information of China (English)

    Wan-qing Chen; Rong-shou Zheng; Si-wei Zhang; Ni Li; Ping Zhao; Guang-lin Li; Liang-you Wu; Jie He

    2012-01-01

    Objective:Annual cancer incidence and mortality in 2008 were provided by National Central Cancer Registry in China,which data were collected from population-based cancer registries in 2011.Methods:There were 56 registries submitted their data in 2008.After checking and evaluating the data quality,total 41 registries' data were accepted and pooled for analysis.Incidence and mortality rates by area (urban or rural areas) were assessed,as well as the age-and sex-specific rates,age-standardized rates,proportions and cumulative rate.Results:The coverage population of the 41 registries was 66,138,784 with 52,158,495 in urban areas and 13,980,289 in rural areas.There were 197,833 new cancer cases and 122,136 deaths in cancer with mortality to incidence ratio of 0.62.The morphological verified rate was 69.33%,and 2.23% of cases were identified by death certificate only.The crude cancer incidence rate in all areas was 299.12/100,000 (330.16/100,000 in male and 267.56/100,000 in female) and the age-standardized incidence rates by Chinese standard population (ASIRC) and world standard population (ASIRW) were 148.75/100,000 and 194.99/100,000,respectively.The cumulative incidence rate (0-74 years old) was of 22.27%.The crude incidence rate in urban areas was higher than that in rural areas.However,after adjusted by age,the incidence rate in urban was lower than that in rural.The crude cancer mortality was 184.67/100,000 (228.14/100,000 in male and 140.48/100,000 in female),and the age-standardized mortality rates by Chinese standard population (ASMRC) and by world population were 84.36/100,000 and 114.32/100,000,respectively.The cumulative mortality rate (0-74 years old) was of 12.89%.Age-adjusted mortality rates in urban areas were lower than that in rural areas.The most common cancer sites were lung,stomach,colon-rectum,liver,esophagus,pancreas,brain,lymphoma,breast and cervix which accounted for 75% of all cancer incidence.Lung cancer was the leading cause of

  16. Clinical Cancer Registries - Are They Up for Health Services Research?

    Science.gov (United States)

    Pobiruchin, Monika; Bochum, Sylvia; Martens, Uwe M; Schramm, Wendelin

    2016-01-01

    Clinical cancer registries are a valuable data source for health services research (HSR). HSR is in need of high quality routine care data for its evaluations. However, the secondary use of routine data - such as documented cancer cases in a disease registry - poses new challenges in terms of data quality, IT-management, documentation processes and data privacy. In the clinical cancer registry Heilbronn-Franken, real-world data from the Giessen Tumor Documentation System (GTDS) was utilized for analyses of patients' disease processes and guideline adherence in follow-up care. A process was developed to map disease state definitions to fields of the GTDS database and extract patients' disease progress information. Thus, the disease process of sub-cohorts could be compared to each other, e.g., comparison of disease free survival of HER2 (human epidermal growth factor receptor 2)-positive and -negative women who were treated with Trastuzumab, a targeted therapy applied in breast cancer. In principle, such comparisons are feasible and of great value for HSR as they depict a routine care setting of a diverse patient cohort. Yet, local documentation practice, missing flow of information from external health care providers or small sub-cohorts impede the analyses of clinical cancer registries data bases and usage for HSR. PMID:27577380

  17. [Twelve years of working of Brazzaville cancer registry].

    Science.gov (United States)

    Nsondé Malanda, Judith; Nkoua Mbon, Jean Bernard; Bambara, Augustin Tozoula; Ibara, Gérard; Minga, Benoît; Nkoua Epala, Brice; Gombé Mbalawa, Charles

    2013-02-01

    The Brazzaville cancer registry was created in 1996 with the support of the International Agency Research against Cancer (IARC) which is located in Lyon, France. The Brazzaville cancer registry is a registry which is based on population which records new cancer cases occurring in Brazzaville by using Canreg 4.0 Software. Its aim is to supply useful information to fight against cancer to physicians and to decision makers. We conducted this study whose target was to determine the incidence of cancer in Brazzaville during twelve years, from January 1st, 1998 to December 31, 2009. During that period 6,048 new cancer cases were recorded: 3,377 women (55.8%), 2,384 men (39.4%), and 287 children (4.8%) from 0 to 14 years old with an annual average of 504 cases. Middle age to the patient's diagnosis was 49.5 years in female sex and 505.5 years old for male sex. The incidence rate of cancers in Brazzaville was 39.8 or 100.000 inhabitants per year and by sex we observed 49 to female sex and 35.2 for male sex. The first cancers localizations observed to women were in order of frequency: breast, cervix uterine, liver ovaries, hematopoietic system, to men : liver, prostate, hematopoietic system, colon and stomach; to children : retina, kidney, hematopoietic system, liver and bones. These rates are the basis to know the burden of cancer among all pathologies of Brazzaville and the achievement of a national cancer control program.

  18. Oral cancer in Libya and development of regional oral cancer registries: A review

    Directory of Open Access Journals (Sweden)

    E. BenNasir

    2015-10-01

    Full Text Available The aims of this paper are three-fold: (1 to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2 to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3 to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people.

  19. Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010–2012

    NARCIS (Netherlands)

    Siesling, S.; Louwman, W.J.; Kwast, A.; Hurk, van den C.J.G.; O'Callaghan, M.; Rosso, S.; Zanetti, R.; Storm, H.; Comber, H.; Steliarova-Foucher, E.; Coebergh, J.W.W.

    2015-01-01

    Aim To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the

  20. Quality of record linkage in a highly automated cancer registry that relies on encrypted identity data

    OpenAIRE

    Schmidtmann, Irene; Sariyar, Murat; Borg, Andreas; Gerold-Ay, Aslihan; Heidinger, Oliver; Hense, Hans-Werner; Krieg, Volker; Hammer, Gaël Paul

    2016-01-01

    Objectives: In the absence of unique ID numbers, cancer and other registries in Germany and elsewhere rely on identity data to link records pertaining to the same patient. These data are often encrypted to ensure privacy. Some record linkage errors unavoidably occur. These errors were quantified for the cancer registry of North Rhine Westphalia which uses encrypted identity data. Methods: A sample of records was drawn from the registry, record linkage information was included. In parallel, pl...

  1. Validity of the stage of lung cancer in records of the Maastricht Cancer Registry, the Netherlands

    NARCIS (Netherlands)

    Schouten, LJ; Langendijk, JA; Jager, JJ; vandenBrandt, PA

    1997-01-01

    Information collected in a clinical study on a random sample of 99 patients with inoperable lung cancer, treated with radiotherapy, was compared to the staging information in the Maastricht cancer registry. Validity of sex (0% disagreements), date of birth (0%), histology (1% major disagreements) an

  2. Gonadotropin-releasing hormone agonist use in men without a cancer registry diagnosis of prostate cancer

    Directory of Open Access Journals (Sweden)

    Kuo Yong-fang

    2008-07-01

    Full Text Available Abstract Background Use of gonadotropin-releasing hormone (GnRH agonists has become popular for virtually all stages of prostate cancer. We hypothesized that some men receive these agents after only a limited work-up for their cancer. Such cases may be missed by tumor registries, leading to underestimates of the total extent of GnRH agonist use. Methods We used linked Surveillance, Epidemiology and End-Results (SEER-Medicare data from 1993 through 2001 to identify GnRH agonist use in men with either a diagnosis of prostate cancer registered in SEER, or with a diagnosis of prostate cancer based only on Medicare claims (from the 5% control sample of Medicare beneficiaries residing in SEER areas without a registered diagnosis of cancer. The proportion of incident GnRH agonist users without a registry diagnosis of prostate cancer was calculated. Factors associated with lack of a registry diagnosis were examined in multivariable analyses. Results Of incident GnRH agonist users, 8.9% had no diagnosis of prostate cancer registered in SEER. In a multivariable logistic regression model, lack of a registry diagnosis of prostate cancer in GnRH agonist users was significantly more likely with increasing comorbidity, whereas it was less likely in men who had undergone either inpatient admission or procedures such as radical prostatectomy, prostate biopsy, or transurethral resection of the prostate. Conclusion Reliance solely on tumor registry data may underestimate the rate of GnRH agonist use in men with prostate cancer.

  3. Cancer Incidence in Egypt: Results of the National Population-Based Cancer Registry Program

    OpenAIRE

    Amal S. Ibrahim; Khaled, Hussein M.; Nabiel NH Mikhail; Hoda Baraka; Hossam Kamel

    2014-01-01

    Background. This paper aims to present cancer incidence rates at national and regional level of Egypt, based upon results of National Cancer Registry Program (NCRP). Methods. NCRP stratified Egypt into 3 geographical strata: lower, middle, and upper. One governorate represented each region. Abstractors collected data from medical records of cancer centers, national tertiary care institutions, Health Insurance Organization, Government-Subsidized Treatment Program, and death records. Data ...

  4. Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology.

    Science.gov (United States)

    Chen, Vivien W; Eheman, Christie R; Johnson, Christopher J; Hernandez, Monique N; Rousseau, David; Styles, Timothy S; West, Dee W; Hsieh, Meichin; Hakenewerth, Anne M; Celaya, Maria O; Rycroft, Randi K; Wike, Jennifer M; Pearson, Melissa; Brockhouse, Judy; Mulvihill, Linda G; Zhang, Kevin B

    2014-01-01

    Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Re-investment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control.

  5. Ekonomický a institucionální vývoj Severní Koreje v letech 1973-2000

    OpenAIRE

    Večerka, Jakub

    2015-01-01

    This bachelor thesis deals with centrally planned economy and economic and institutional development of North Korea between the years 1973-2000. The first part of this thesis explains the elemental features of centrally planned economy as well as its advantages and disadvantages. The second part of this thesis aims to briefly describe the development and key institutions of North Korea, to examine international trade of the DPRK between 1973-2000 and to outline North Korea's dependence on Sov...

  6. Roles of cancer registries in enhancing oncology drug access in the Asia-Pacific region.

    Science.gov (United States)

    Soon, Swee-Sung; Lim, Hwee-Yong; Lopes, Gilberto; Ahn, Jeonghoon; Hu, Min; Ibrahim, Hishamshah Mohd; Jha, Anand; Ko, Bor-Sheng; Lee, Pak Wai; Macdonell, Diana; Sirachainan, Ekaphop; Wee, Hwee-Lin

    2013-01-01

    Cancer registries help to establish and maintain cancer incidence reporting systems, serve as a resource for investigation of cancer and its causes, and provide information for planning and evaluation of preventive and control programs. However, their wider role in directly enhancing oncology drug access has not been fully explored. We examined the value of cancer registries in oncology drug access in the Asia-Pacific region on three levels: (1) specific registry variable types; (2) macroscopic strategies on the national level; and (3) a regional cancer registry network. Using literature search and proceedings from an expert forum, this paper covers recent cancer registry developments in eight economies in the Asia-Pacific region - Australia, China, Hong Kong, Malaysia, Singapore, South Korea, Taiwan, and Thailand - and the ways they can contribute to oncology drug access. Specific registry variables relating to demographics, tumor characteristics, initial treatment plans, prognostic markers, risk factors, and mortality help to anticipate drug needs, identify high-priority research area and design access programs. On a national level, linking registry data with clinical, drug safety, financial, or drug utilization databases allows analyses of associations between utilization and outcomes. Concurrent efforts should also be channeled into developing and implementing data integrity and stewardship policies, and providing clear avenues to make data available. Less mature registry systems can employ modeling techniques and ad-hoc surveys while increasing coverage. Beyond local settings, a cancer registry network for the Asia-Pacific region would offer cross-learning and research opportunities that can exert leverage through the experiences and capabilities of a highly diverse region. PMID:23725106

  7. Cancer Incidence - Surveillance, Epidemiology, and End Results (SEER) Registries Limited-Use

    Data.gov (United States)

    U.S. Department of Health & Human Services — SEER Limited-Use cancer incidence data with associated population data. Geographic areas available are county and SEER registry. The Surveillance, Epidemiology, and...

  8. Age distribution, polyps and rectal cancer in the Egyptian population-based cancer registry

    Institute of Scientific and Technical Information of China (English)

    Darlene Veruttipong; Amr S Soliman; Samuel F Gilbert; Taylor S Blachley; Ahmed Hablas; Mohamed Ramadan; Laura S Rozek; Ibrahim A Seifeldin

    2012-01-01

    AIM:To describe the clinical and epidemiologic profiles of the disease and to compare the findings with those generated from the previous hospital-based studies.METHODS:The Gharbiah cancer registry is the only population-based cancer registry in Egypt since 1998.We analyzed the data of all colorectal cancer patients included in the registry for the period of 1999-2007.All medical records of the 1364 patients diagnosed in Gharbiah during the study period were retrieved and the following information abstracted:age,residence,diagnosis date,grade,stage,topology,clinical characteristics,and histology variables.Egyptian census data for 1996 and 2006 were used to provide the general population's statistics on age,sex,residence and other related demographic factors.In addition to age-and sex-specific incidence rate analyses,we analyze the data to explore the incidence distribution by rural-urban differences among the 8 districts of the province.We also compared the incidence rates of Gharbiah to the rates of the Surveillance Epidemiology and End Results (SEER) data of the United States.RESULTS:Over the 9 year-period,1364 colorectal cancer cases were included.The disease incidence under age 40 years was relatively high (1.3/105) while the incidence in the age groups 40 and over was very low (12.0/105,19.4/105 and 21.2/105 in the age groups 40-59 years,60-69 years and > 70 years,respectively).The vast majority of tumors (97.2%) had no polyps and 37.2% of the patients presented with primary lesions in the rectum.Colorectal cancer was more common in patients from urban (55%) than rural (45%) areas.Regional differences in colon and rectal cancer incidence in the 8 districts of the study province may refleet different etiologic patterns in this population.The registry data of Egypt shows a slightly higher incidence of colorectal cancer than the United States in subjects under age 40 years.The results also shows significantly lower incidence of colorectal cancer in

  9. Developing National Cancer Registration in Developing Countries- Case Study of the Nigerian National System of Cancer Registries

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    Elima E Jedy-Agba

    2015-07-01

    Full Text Available The epidemiologic transition in sub-Saharan Africa (SSA has given rise to a concomitant increase in the incidence of non-communicable diseases including cancers. Worldwide, cancer registries have been shown to be critical for the determination of cancer burden, conduct of research, and in the planning and implementation of cancer control measures. Cancer registration though vital is often neglected in SSA owing to competing demands for resources for healthcare.We report the implementation of a system for representative nation-wide cancer registration in Nigeria - the Nigerian National System of Cancer Registries (NSCR. The NSCR coordinates the activities of cancer registries in Nigeria, strengthens existing registries, establishes new registries, complies and analyses data, and makes these freely available to researchers and policy makers. We highlight the key challenges encountered in implementing this strategy and how they were overcome. This report serves as a guide for other low and middle income countries (LMIC wishing to expand cancer registration coverage in their countries and highlights the training, mentoring, scientific and logistic support, and advocacy that are crucial to sustaining cancer registration programs in LMIC

  10. Linking Tumor Registry and Medicaid Claims to Evaluate Cancer Care Delivery

    OpenAIRE

    Schrag, Deborah; Virnig, Beth A.; Warren, Joan L.

    2009-01-01

    The utility of Medicaid claims for studying cancer care is not known. Our objective was to evaluate how well Medicaid claims capture diagnostic and treatment information recorded by the California Cancer Registry (CCR). We compared cancer treatment from Medicaid claims with CCR data, using 1988-2000 cases matched with 1997-1998 Medicaid enrollment data. Medicaid claims corroborated diagnoses for 73 percent of breast and 68 percent of colorectal cancers in CCR. Medicaid claims confirmed surger...

  11. Cancer incidence in Arkhangelskaja Oblast in northwestern Russia. The Arkhangelsk Cancer Registry

    Directory of Open Access Journals (Sweden)

    Tkatsjov Anatolij V

    2005-07-01

    Full Text Available Abstract Background Data concerning incidence and prevalence of cancer in the different regions of Russia have traditionally not been provided on a basis that facilitated comparison with data from countries in western parts of Europe. The oncological hospital in Arkhangelsk, in co-operation with Universitetet i Tromsø (Norway, has established a population based cancer registry for Arkhangelskaja Oblast (AO. AO is an administrative unit with 1.3 million inhabitants in northwestern Russia. The aim of this investigation was to assess the content and quality of the AO cancer registry (AKR, and to present the site-specific cancer-incidence rates in AO in the period 1993–2001. Methods The population in this study consisted of all individuals registered as residents of AO. All new cancer cases in the period 1993 – 2001, registered the AKR, were included in the study (ICD-10: C00-C95, except for C77-78. The annual gender and age-group-specific population figures were obtained from the AO statistics office. Results A total of 34 697 cases of primary cancers were included. The age-adjusted (world standard incidence rate for all sites combined was 164/100 000 for women and 281/100 000 for men. The highest incidence was for cancer of the trachea, bronchus and lung (16.3% of all cases, whereof 88.6 % of the cases were among men. Among women, cancer of the breast constituted 15.9 percent of all cases. The age-adjusted incidences of the most frequent cancer sites among men were: lung (77.4/100 000; stomach (45.9; rectum (13.4; oesophagus (13.0; colon (12.2; bladder (11.6; and prostate cancer (11.1. Among women they were: breast (28.5; stomach (19.7; colon (12.2; and ovary cancer (9.0. Conclusion Our findings confirm and strengthen the indication that the incidences of stomach, larynx, liver, pancreas, prostate, colon, bladder and melanoma cancer are quite different in male populations in Russia compared to many other European countries. Among women, most

  12. Quality of record linkage in a highly automated cancer registry that relies on encrypted identity data

    Directory of Open Access Journals (Sweden)

    Schmidtmann, Irene

    2016-06-01

    Full Text Available Objectives: In the absence of unique ID numbers, cancer and other registries in Germany and elsewhere rely on identity data to link records pertaining to the same patient. These data are often encrypted to ensure privacy. Some record linkage errors unavoidably occur. These errors were quantified for the cancer registry of North Rhine Westphalia which uses encrypted identity data. Methods: A sample of records was drawn from the registry, record linkage information was included. In parallel, plain text data for these records were retrieved to generate a gold standard. Record linkage error frequencies in the cancer registry were determined by comparison of the results of the routine linkage with the gold standard. Error rates were projected to larger registries.Results: In the sample studied, the homonym error rate was 0.015%; the synonym error rate was 0.2%. The F-measure was 0.9921. Projection to larger databases indicated that for a realistic development the homonym error rate will be around 1%, the synonym error rate around 2%.Conclusion: Observed error rates are low. This shows that effective methods to standardize and improve the quality of the input data have been implemented. This is crucial to keep error rates low when the registry’s database grows. The planned inclusion of unique health insurance numbers is likely to further improve record linkage quality. Cancer registration entirely based on electronic notification of records can process large amounts of data with high quality of record linkage.

  13. A validated algorithm to ascertain colorectal cancer recurrence using registry resources in Denmark

    DEFF Research Database (Denmark)

    Lash, Timothy L; Riis, Anders H; Ostenfeld, Eva B;

    2015-01-01

    Colorectal cancer recurrences are difficult to ascertain accurately and efficiently. We developed and validated an algorithm to identify recurrences that uses Danish medical registries. The algorithm uses metastasis and chemotherapy codes in the Danish National Patient Registry and codes indicating...... with local disease. In the actively followed cohort, the cumulative incidence of recurrence overlapped substantially when recurrence was imputed by our algorithm or using the follow-up data. Despite some limitations regarding ambiguous pathology codes, our algorithm showed excellent performance against...... cancer recurrence in the Danish Pathology Registry. We applied the algorithm to a cohort (n=21,246) of colorectal cancer patients diagnosed 2001-2011 and followed through 2012. In a cohort (n=355) of two groups of actively followed patients, we compared the imputed recurrence data with recurrences...

  14. Accuracy of Self-Reported Breast Cancer Information among Women from the Ontario Site of the Breast Cancer Family Registry

    OpenAIRE

    Andriana Barisic; Gord Glendon; Nayana Weerasooriya; Andrulis, Irene L.; Knight, Julia A.

    2012-01-01

    Obtaining complete medical record information can be challenging and expensive in breast cancer studies. The current literature is limited with respect to the accuracy of self-report and factors that may influence this. We assessed the agreement between self-reported and medical record breast cancer information among women from the Ontario site of the Breast Cancer Family Registry. Women aged 20–69 years diagnosed with incident breast cancer 1996–1998 were identified from the Ontario Cancer R...

  15. Recruitment of representative samples for low incidence cancer populations: Do registries deliver?

    Directory of Open Access Journals (Sweden)

    Sanson-Fisher Rob

    2011-01-01

    Full Text Available Abstract Background Recruiting large and representative samples of adolescent and young adult (AYA cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56% received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8% refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32 completed the questionnaire. Conclusions Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered.

  16. Cancer Incidence and Mortality in Ardabil: Report of an Ongoing Population-Based Cancer Registry in Iran, 2004-2006

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    M Babaei

    2009-12-01

    Full Text Available "nBackground: Ardabil cancer registry is the first population-based cancer registry in Iran that was established in 2000. The first report from this registry revealed that Ardabil has one of the highest rate of gastric cardia cancer and the lowest rate of cer­vical cancer in the world. We aim to update the cancer incidence in this area by the second follow up report from this registry."nMethod: Data on all newly diagnosed cancer cases between 2004 and 2006 were actively collected. CanReg4 software was used for data entry and the data of cancer-related death were obtained from the comprehensive death registry system."nResults: More than 4300 new cases were registered during 3 years. Diagnosis of cancer was based on histopathology in 69%, clinical investigation 8%, clinical only 5%, and Death Certificate Only (DCO in 18% of cases. In terms of age-stan­dardized rate (/100,000, the five leading cancers in men (excluding skin cancer were stomach (51.8, esophagus (19.5, blad­der (13.1, lung and bronchus (10.8, and colorectal (9.6; in women, they were stomach (24.9, esophagus (19.7, breast (11.9, colon and rectum (7.4, and brain tumors (6.9. According to death registration data, upper gastrointestinal can­cers constituted more than 43% of cancer-related death in Ardabil."nConclusions: The ASR for gastric cancer is among the highest rate for this cancer in male and female in the world. Most of the cancers, especially in female, have a significant increase compared to previous report from Ardabil. This is most likely due to the change in the registration practice.  

  17. [The contribution of clinical cancer registries to benefit assessments: Requirements and first results].

    Science.gov (United States)

    Klinkhammer-Schalke, Monika; Hofstädter, Ferdinand; Gerken, Michael; Benz, Stefan

    2016-01-01

    Following the adoption of the Cancer Screening and Registry Act (KFRG) to advance the development of the early detection of cancer and to promote quality assurance through Clinical Cancer Registries according to Sect. 65c SGB V, the question is raised as to what extent population-based clinical cancer registries may contribute not only to direct patient treatment benefits, but also to the requirements of health research and to other issues such as, for example, the evaluation of the benefit of new pharmaceutical products. Efforts to improve a nationwide quality management for oncology have so far not been successful in the development of comprehensive documentation at all levels of care. New organizational structures such as population-based clinical cancer registries were supposed to solve this problem more sufficiently, but they must be accompanied by valid trans-sectorial documentation and evaluation of clinical data. The need for specific real-life outcomes (effectiveness) of specific therapies has led to calls for data from outside randomised clinical trials (efficacy). First results are demonstrated in the present article. PMID:27320026

  18. The National Program of Cancer Registries: Explaining State Variations in Average Cost per Case Reported

    Directory of Open Access Journals (Sweden)

    Hannah K. Weir, PhD

    2005-07-01

    Full Text Available Introduction The Centers for Disease Control and Prevention’s National Program of Cancer Registries is a federally funded surveillance program that provides support and assistance to state and territorial health departments for the operation of cancer registries. The objective of this study was to identify factors associated with the Centers for Disease Control and Prevention’s costs to report cancer cases during the first 5 years of the National Program of Cancer Registries. Methods Information on expenditures and number of cases reported through the National Program of Cancer Registries was used to estimate the average cost per case reported for each state program. Additional information was obtained from other sources, and regression analyses were used to assess the contribution of each factor. Results Average costs of the National Program of Cancer Registries differed substantially among programs and were inversely associated with the number of cases reported (P < .001. The geographic area of the state was positively associated with the cost (P = .01, as was the regional cost of living (P = .08, whereas the program type (i.e., enhancement or planning was inversely associated with cost (P = .08. Conclusion The apparent existence of economies of scale suggests that contiguous state programs might benefit from sharing infrastructure and other fixed costs, such as database management resources, depending on the geographic area and population size served. Sharing database management resources might also promote uniform data collection and quality control practices, reduce the information-sharing burden among states, and allow more resources to be used for other cancer prevention and control activities.

  19. The Spatial Distribution of Cancer Incidence in Fars Province: A GIS-Based Analysis of Cancer Registry Data

    OpenAIRE

    Ali Goli; Mahbobeh Oroei; Mehdi Jalalpour; Hossein Faramarzi; Mehrdad Askarian

    2013-01-01

    Background: Cancer is a major health problem in the developing countries. Variations of its incidence rate among geographical areas are due to various contributing factors. This study was performed to assess the spatial patterns of cancer incidence in the Fars Province, based on cancer registry data and to determine geographical clusters. Methods: In this cross sectional study, the new cases of cancer were recorded from 2001 to 2009. Crude incidence rate was estimated based on age groups ...

  20. Burden of cancer in Malawi; common types, incidence and trends: National population-based cancer registry

    Directory of Open Access Journals (Sweden)

    Msyamboza Kelias

    2012-03-01

    Full Text Available Abstract Background Cancer is a leading cause of morbidity and mortality worldwide with a majority of cases and deaths occurring in developing countries. While cancer of the lung, breast, colorectum, stomach and prostate are the most common types of cancer globally, in east and southern Africa these are less common and comprehensive data to inform policies are lacking. Methods Nationwide cancer registry was conducted between September and October 2010 in Malawi. New cancer cases registered from 2007 to 2010 were identified from hospital and clinic registers of 81 out of 84 health facilities providing cancer diagnosis, treatment or palliative care services. Demographic and cancer data were extracted from registers and case notes using a standard form. Results A total of 18,946 new cases of cancer were registered in Malawi from 2007-2010. Of these 55.9% were females, 7.2% were children aged less than 15 years, 76.5% were adults aged 15-59 years and 16.4% were elderly aged 60 years or more. Only 17.9% of the cases had histologically verified diagnosis, 33.2% were diagnosed clinically and 49.6% based on clinical and some investigations. Amongst females, cancer of the cervix was the commonest accounting for 45.4% of all cases followed by Kaposi sarcoma (21.1%, cancer of the oesophagus (8.2%, breast (4.6% and non-Hodgkin lymphoma (4.1%. In males, Kaposi sarcoma was the most frequent (50.7% then cancer of oesophagus (16.9%, non-Hodgkin lymphoma (7.8, prostate (4.0% and urinary bladder (3.7%. Age-standardised incidence rate per 100,000 population for all types of cancer in males increased from 31 in 1999-2002 to 56 in 2007-2010. In females it increased from 29 to 69. Kaposi sarcoma and cancer of the oesophagus, cervical cancer and Kaposi sarcoma were the main causes for the increased incidence in males and females respectively. It was estimated that, annually at least 8,151 new cases of cancer (all types occur in Malawi. Conclusions This study provided

  1. Leukaemia and occupation: a New Zealand Cancer Registry-based case-control Study.

    NARCIS (Netherlands)

    McLean, D.; 't Mannetje, A.; Dryson, E.; Walls, C.; McKenzie, F.; Maule, M.; Cheng, S.; Cunningham, C.; Kromhout, H.; Boffetta, P.; Blair, A.; Pearce, N.

    2009-01-01

    BACKGROUND: To examine the association between occupation and leukaemia. METHODS: We interviewed 225 cases (aged 20-75 years) notified to the New Zealand Cancer Registry during 2003-04, and 471 controls randomly selected from the Electoral Roll collecting demographic details, information on potentia

  2. Epidemiology of Breast Cancer among Bahraini Women; Data from the Bahrain Cancer Registry

    Directory of Open Access Journals (Sweden)

    Randah R. Hamadeh

    2014-05-01

    Full Text Available Objectives: The aim of this study was to describe the epidemiology of breast cancer among the Bahraini female population in the years 2000‒2010 and examine its health policy implications. Methods: All breast cancer cases in the Bahrain Cancer Registry from 1st January 2000 to 31st December 2010 were included. Results: There were 1,005 cases, 12.7% of which were detected by screening. The overall mean age at diagnosis was 50.9 years (95% confidence interval 50.1–51.6. The age-standardised incidence rate declined from 58.2 per 100,000 in 2000 to 44.4 per 100,000 in 2010. The majority of cases were infiltrating ductal carcinoma (76.9%. Of the registered cases, 44.1% and 48.1% had an unknown grade and stage, respectively. The five-year survival rate was 63 ± 2%. Conclusion: The low percentage of cases detected by screening merits further evaluation of Bahrain’s screening programme. More effort should be made to reduce the proportion of unknown stage and grade breast cancers. Future research has to be directed towards understanding the reasons for Bahrain having the highest incidence rate of breast cancer in the Gulf Cooperation Council countries.

  3. Increased Incidence of Early Onset Colorectal Cancer in Arizona: A Comprehensive 15-year Analysis of the Arizona Cancer Registry

    Science.gov (United States)

    Aziz, Hassan; Pandit, Viraj; DiGiovanni, Ryan M.; Ohlson, Eric; Gruessner, Angelika C.; Jandova, Jana; Nfonsam, Valentine N.

    2016-01-01

    Introduction The aim of this study was to investigate and analyze the incidence of early-onset colorectal cancer in Arizona, using the Arizona Cancer Registry. Methods We performed a retrospective analysis of patients with colorectal cancer reported in the Arizona Cancer Registry from 1995-2010. Outcome measure: incidence of CRC in patients younger than 50 years. Results 39,623 cases of colorectal cancer were reported to the Arizona Cancer Registry during a period of 15 years. Overall, there was a 17% decrease in the incidence of CRC. However, there was a 23% increase in incidence among patients in the age group 10-50. During the same time period, 15% and 41% increase in the incidence of colon and rectal cancer was observed, respectively. The most significant increase (102%) in overall CRC incidence was seen in the age group 10-29. The highest increase (110%) in incidence of colon cancer was observed in the same age group, while the most significant increase in incidence rates (225%) of rectal cancer was seen in the age group 30-34. Conclusion Although there is an overall decrease in incidence of colorectal cancer in Arizona, alarming increase in incidence of early-onset CRC was observed; mirroring the national trends.

  4. Cancer incidence and incidence rates in Japan in 2008: a study of 25 population-based cancer registries for the Monitoring of Cancer Incidence in Japan (MCIJ) project.

    Science.gov (United States)

    Matsuda, Ayako; Matsuda, Tomohiro; Shibata, Akiko; Katanoda, Kota; Sobue, Tomotaka; Nishimoto, Hiroshi

    2014-04-01

    The Japan Cancer Surveillance Research Group aimed to estimate the cancer incidence in Japan in 2008 based on data collected from 25 of 34 population-based cancer registries, as part of the Monitoring of Cancer Incidence in Japan project. The incidence in Japan for 2008 was estimated to be 749 767 (C00-C96). Stomach cancer and breast cancer were the leading types of cancer in males and females, respectively.

  5. Muddy Water? Variation in Reporting Receipt of Breast Cancer Radiation Therapy by Population-Based Tumor Registries

    International Nuclear Information System (INIS)

    Purpose: To evaluate, in the setting of breast cancer, the accuracy of registry radiation therapy (RT) coding compared with the gold standard of Medicare claims. Methods and Materials: Using Surveillance, Epidemiology, and End Results (SEER)–Medicare data, we identified 73,077 patients aged ≥66 years diagnosed with breast cancer in the period 2001-2007. Underascertainment (1 - sensitivity), sensitivity, specificity, κ, and χ2 were calculated for RT receipt determined by registry data versus claims. Multivariate logistic regression characterized patient, treatment, and geographic factors associated with underascertainment of RT. Findings in the SEER–Medicare registries were compared with three non-SEER registries (Florida, New York, and Texas). Results: In the SEER–Medicare registries, 41.6% (n=30,386) of patients received RT according to registry coding, versus 49.3% (n=36,047) according to Medicare claims (P<.001). Underascertainment of RT was more likely if patients resided in a newer SEER registry (odds ratio [OR] 1.70, 95% confidence interval [CI] 1.60-1.80; P<.001), rural county (OR 1.34, 95% CI 1.21-1.48; P<.001), or if RT was delayed (OR 1.006/day, 95% CI 1.006-1.007; P<.001). Underascertainment of RT receipt in SEER registries was 18.7% (95% CI 18.6-18.8%), compared with 44.3% (95% CI 44.0-44.5%) in non-SEER registries. Conclusions: Population-based tumor registries are highly variable in ascertainment of RT receipt and should be augmented with other data sources when evaluating quality of breast cancer care. Future work should identify opportunities for the radiation oncology community to partner with registries to improve accuracy of treatment data

  6. Muddy Water? Variation in Reporting Receipt of Breast Cancer Radiation Therapy by Population-Based Tumor Registries

    Energy Technology Data Exchange (ETDEWEB)

    Walker, Gary V. [Department of Radiation Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); Giordano, Sharon H. [Department of Breast Medical Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); Williams, Melanie [Texas Cancer Registry, Department of State Health Services, Austin, Texas (United States); Jiang, Jing [Division of Quantitative Sciences, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); Niu, Jiangong [Department of Breast Medical Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); MacKinnon, Jill; Anderson, Patricia; Wohler, Brad [Florida Cancer Data System, University of Miami School of Medicine, Miami, Florida (United States); Sinclair, Amber H.; Boscoe, Francis P.; Schymura, Maria J. [New York State Cancer Registry, New York State Department of Health, Albany, New York (United States); Buchholz, Thomas A. [Department of Radiation Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States); Smith, Benjamin D., E-mail: BSmith3@mdanderson.org [Department of Radiation Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas (United States)

    2013-07-15

    Purpose: To evaluate, in the setting of breast cancer, the accuracy of registry radiation therapy (RT) coding compared with the gold standard of Medicare claims. Methods and Materials: Using Surveillance, Epidemiology, and End Results (SEER)–Medicare data, we identified 73,077 patients aged ≥66 years diagnosed with breast cancer in the period 2001-2007. Underascertainment (1 - sensitivity), sensitivity, specificity, κ, and χ{sup 2} were calculated for RT receipt determined by registry data versus claims. Multivariate logistic regression characterized patient, treatment, and geographic factors associated with underascertainment of RT. Findings in the SEER–Medicare registries were compared with three non-SEER registries (Florida, New York, and Texas). Results: In the SEER–Medicare registries, 41.6% (n=30,386) of patients received RT according to registry coding, versus 49.3% (n=36,047) according to Medicare claims (P<.001). Underascertainment of RT was more likely if patients resided in a newer SEER registry (odds ratio [OR] 1.70, 95% confidence interval [CI] 1.60-1.80; P<.001), rural county (OR 1.34, 95% CI 1.21-1.48; P<.001), or if RT was delayed (OR 1.006/day, 95% CI 1.006-1.007; P<.001). Underascertainment of RT receipt in SEER registries was 18.7% (95% CI 18.6-18.8%), compared with 44.3% (95% CI 44.0-44.5%) in non-SEER registries. Conclusions: Population-based tumor registries are highly variable in ascertainment of RT receipt and should be augmented with other data sources when evaluating quality of breast cancer care. Future work should identify opportunities for the radiation oncology community to partner with registries to improve accuracy of treatment data.

  7. The Basic Facts of Korean Breast Cancer in 2013: Results of a Nationwide Survey and Breast Cancer Registry Database.

    Science.gov (United States)

    Min, Sun Young; Kim, Zisun; Hur, Min Hee; Yoon, Chan Seok; Park, Eun-Hwa; Jung, Kyu-Won

    2016-03-01

    The Korean Breast Cancer Society (KBCS) has reported a nationwide breast cancer data since 1996. We present a comprehensive report on the facts and trends of breast cancer in Korea in 2013. Data on the newly diagnosed patients in the year 2013 were collected from 99 hospitals by using nationwide questionnaire survey. Clinical characteristics such as stage of cancer, histologic types, biological markers, and surgical management were obtained from the online registry database. A total of 19,316 patients were newly diagnosed with breast cancer in 2013. The crude incidence rate of female breast cancer including carcinoma in situ was 76.2 cases per 100,000 women. The median age at diagnosis was 50 years, and the proportions of postmenopausal women with breast cancer accounted for more than half of total patients. The proportion of early breast cancer increased consistently, and the pathologic features have changed accordingly. Breast-conserving surgery was performed in more cases than total mastectomy in the year. The total number of breast reconstruction surgeries markedly increased approaching 3-fold in last 11 years. According to annual percentile change of invasive cancer incidence, the incidence increased rapidly until 2010. And thereafter the increase of it became steadier. For ductal carcinoma in situ, the incidence consistently increased during the same period without any joinpoint. Analysis of nationwide registry data will contribute to defining of the trends and characteristics of breast cancer in Korea.

  8. Genetic variations in SMAD7 are associated with colorectal cancer risk in the colon cancer family registry.

    Directory of Open Access Journals (Sweden)

    Xuejuan Jiang

    Full Text Available Recent genome-wide studies identified a risk locus for colorectal cancer at 18q21, which maps to the SMAD7 gene. Our objective was to confirm the association between SMAD7 SNPs and colorectal cancer risk in the multi-center Colon Cancer Family Registry.23 tagging SNPs in the SMAD7 gene were genotyped among 1,592 population-based and 253 clinic-based families. The SNP-colorectal cancer associations were assessed in multivariable conditional logistic regression.Among the population-based families, both SNPs rs12953717 (odds ratio, 1.29; 95% confidence interval, 1.12-1.49, and rs11874392 (odds ratio, 0.80; 95% confidence interval, 0.70-0.92 were associated with risk of colorectal cancer. These associations were similar among the population- and the clinic-based families, though they were significant only among the former. Marginally significant differences in the SNP-colorectal cancer associations were observed by use of nonsteroidal anti-inflammatory drugs, cigarette smoking, body mass index, and history of polyps.SMAD7 SNPs were associated with colorectal cancer risk in the Colon Cancer Family Registry. There was evidence suggesting that the association between rs12953717 and colorectal cancer risk may be modified by factors such as smoking and use of nonsteroidal anti-inflammatory drugs.

  9. Cancer patterns among children of Turkish descent in Germany: A study at the German Childhood Cancer Registry

    Directory of Open Access Journals (Sweden)

    Kaatsch Peter

    2008-05-01

    Full Text Available Abstract Background Cancer risks of migrants might differ from risks of the indigenous population due to differences in socioeconomic status, life style, or genetic factors. The aim of this study was to investigate cancer patterns among children of Turkish descent in Germany. Methods We identified cases with Turkish names (as a proxy of Turkish descent among the 37,259 cases of childhood cancer registered in the German Childhood Cancer Registry (GCCR during 1980–2005. As it is not possible to obtain reference population data for children of Turkish descent, the distribution of cancer diagnoses was compared between cases of Turkish descent and all remaining (mainly German cases in the registry, using proportional cancer incidence ratios (PCIRs. Results The overall distribution of cancer diagnoses was similar in the two groups. The PCIRs in three diagnosis groups were increased for cases of Turkish descent: acute non-lymphocytic leukaemia (PCIR 1.23; CI (95% 1.02–1.47, Hodgkin's disease (1.34; 1.13–1.59 and Non-Hodgkin/Burkitt lymphoma (1.19; 1.02–1.39. Age, sex, and period of diagnosis showed no influence on the distribution of diagnoses. Conclusion No major differences were found in cancer patterns among cases of Turkish descent compared to all other cases in the GCCR. Slightly higher proportions of systemic malignant diseases indicate that analytical studies involving migrants may help investigating the causes of such cancers.

  10. Data quality at the Bulgarian National Cancer Registry: An overview of comparability, completeness, validity and timeliness.

    Science.gov (United States)

    Dimitrova, Nadya; Parkin, Donald Maxwell

    2015-06-01

    Reporting of neoplasms in Bulgaria has been compulsory since a directive from the Ministry of Health in 1951. The quality of cancer registry data has been estimated rather infrequently in past years. We aimed to provide a comprehensive evaluation of the quality of the data at the Bulgarian National Cancer Registry (BNCR). Quantitative and semi-quantitative methods were applied for cancers diagnosed during the whole period 1993-2010, and also for cases diagnosed in 2006-2010. The methods used include historic data methods, mortality-to-incidence ratios (M:I), capture-recapture and death-certificate methods, proportions of morphologically verified cases (MV%), death-certificate-only cases (DCO%), and cases with missing information (primary site unknown, PSU%; stage unknown, SU%). The BNCR coding and classification systems follow international standards. The overall completeness was estimated at 92.6-94.7% for the period 2006-2010, with variations between cancer sites (86.7-98.5%). During the period 1993-2010, M:I decreased to 0.5 for males and 0.4 for females, MV increased to 87.4%, DCO and SU decreased to 4.8% and 18.8%, respectively, and PSU remained at the same level of about 4% for both sexes together. Sub-analysis revealed differences by site, sex and age groups. The comparison with other registries from the region showed similar incidence rates and directions of trends: M:I, MV% and DCO% that were not significantly different. The underreporting in 2008 and 2009 due to timely publication was estimated at an overall 0.8% and 0.5%, respectively. The present review showed that the BNCR yields internationally comparable data that are reasonably accurate, timely, and close to complete, especially in recent years. This is a prerequisite for the BNCR to expand its role to more areas of cancer control.

  11. Cardiovascular medication after cancer at a young age in Finland: A nationwide registry linkage study.

    Science.gov (United States)

    Kero, A E; Madanat-Harjuoja, L M; Järvelä, L S; Malila, N; Matomäki, J; Lähteenmäki, P M

    2016-08-01

    Despite improved survival rates, childhood and young adult (YA) cancer survivors face elevated risks for life-threatening morbidities, especially cardiovascular complications. Our nationwide Finnish registry study investigated the purchases of cardiovascular medication from 1993 to 2011 in patients diagnosed with cancer aged below 35 years (N = 8,197) between 1993 and 2004 compared to siblings (N = 29,974) via linkage to the drug purchase registry. The cumulative incidence for purchasing cardiovascular medications was higher in childhood and YA cancer patients compared to siblings with a rising trend over time. After childhood cancer, the highest hazard ratio (HR) was found for purchasing anticoagulants (HR 19.8, 95% CI 8.5-45.9). The HRs for any cardiovascular medication (HR 7.2, 95% CI 5.1-10.1) and cardiac medication (HR 4.8, 95% CI 3.3-6.9) were markedly elevated after childhood cancer as well. Regarding YA cancer patients, the respective HRs were 2.5 (95% CI 2.0-3.2) for anticoagulants, HR 1.7 (95% CI 1.5-1.9) for any cardiovascular medication and HR 1.5 (95% CI 1.3-1.7) for cardiac medication. Among cancer patients, highest HRs for cardiovascular medication were observed after childhood acute lymphoblastic leukemia (ALL) and bone tumors (HR 10.2, 95% CI 6.8-15.5 and HR 7.4, 95% CI 4.0-13.7) and YA ALL and acute myeloid leukemia (HR 5.1, 95% CI 3.5-7.1 and HR 2.8, 95% CI 1.8-4.0). Our study demonstrated increased HRs for purchasing cardiovascular medication after early-onset cancer compared to siblings reflecting elevated cardiovascular morbidity. Thus, the implementation of long-term cardiovascular disease screening is imperative to prevent, detect and adequately treat cardiovascular late effects after cancer at a young age. PMID:26610262

  12. Plasma Protein Carbonyls and Breast Cancer Risk in Sisters Discordant for Breast Cancer from the New York Site of the Breast Cancer Family Registry

    OpenAIRE

    Zipprich, Jennifer; Terry, Mary Beth; Liao, Yuyan; Agrawal, Meenakshi; Gurvich, Irina; Senie, Ruby; Santella, Regina M.

    2009-01-01

    Reactive Oxygen Species (ROS) are important in the pathogenesis of many diseases, including breast cancer. Several population-based case-control studies have demonstrated that various biomarkers of oxidative stress are associated with an increase in breast cancer risk. We selected sisters discordant for breast cancer (n=645) from the New York site of the Breast Cancer Family Registry to explore factors that contribute to variation in plasma protein carbonyls, and to determine whether this bio...

  13. Comparison of Eligibility Criteria Between Protocols, Registries, and Publications of Cancer Clinical Trials.

    Science.gov (United States)

    Zhang, Sheng; Liang, Fei; Li, Wenfeng; Tannock, Ian

    2016-11-01

    Trial registration and public accessibility of appended or published protocols of phase III randomized clinical trials (RCTs) allow comparison of reported research with essential aspects of trial design. We determined how eligibility criteria of participants specified in protocols were described in trial registries and articles of 255 cancer RCTs published in leading journals. The mean proportion of matching eligibility criteria between protocols and publications per trial (the primary endpoint) was 44.0% (95% confidence interval [CI] = 40.8% to 47.3%). Almost all discrepancies in eligibility criteria (96.7%, 95% CI = 96.1% to 97.3%) suggested to readers of articles that a broader study population was included. The mean proportion of matching eligibility criteria between protocols and registries was 72.9% (95% CI = 68.2% to 77.7%, the secondary endpoint). We conclude that there are substantial differences in eligibility criteria between trial protocols, registries and articles. Inaccurate reporting of eligibility criteria may prevent appropriate assessment of the applicability of trial results. PMID:27226519

  14. Cancer registries in Europe-going forward is the only option.

    Science.gov (United States)

    Forsea, Ana-Maria

    2016-01-01

    Cancer registries (CR) are the fundamental source of objective cancer data, and thus are indispensable for the evaluation of the cancer burden and for design of effective cancer control plans. Their potential roles spread far beyond epidemiological research, from the exploration of the causes of cancer to health economics, from the evaluation of mass screening programmes to monitoring the quality and outcomes of health services, from addressing the inequalities in access to healthcare, to patients' quality of life analyses, from treatment safety to the development of biomarkers. In Europe, cancer registration is challenged by significant disparities in the quality and coverage of CRs, by insufficient harmonisation and comparability of procedures and data, by heterogeneous legislation that limits CR's abilities for networking, collaboration, and participation in research. These arise against the background of large variations in economical, regulatory, social, and cultural national contexts. Important steps have been taken at European Union (EU)-level in recent years towards mapping and understanding these challenges, identifying best practices and formulating sensible recommendations, and creating the policy frameworks and the tools for cooperation and information sharing. Yet, as cancer has now become the second cause of death in Europe, one third of the population still lacks quality cancer registration, mostly in the regions with lowest resources and health status. It is therefore imperative that the efforts to support the development of CRs continue, and that the wealth of knowledge and vision acquired in this area is transformed into action. PMID:27350787

  15. Prostate Cancer in South Africa: Pathology Based National Cancer Registry Data (1986–2006 and Mortality Rates (1997–2009

    Directory of Open Access Journals (Sweden)

    Chantal Babb

    2014-01-01

    Full Text Available Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA from the pathology based National Cancer Registry (1986–2006 and data on mortality (1997–2009 from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma. There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA.

  16. Prostate cancer in South Africa: pathology based national cancer registry data (1986-2006) and mortality rates (1997-2009).

    Science.gov (United States)

    Babb, Chantal; Urban, Margaret; Kielkowski, Danuta; Kellett, Patricia

    2014-01-01

    Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA) from the pathology based National Cancer Registry (1986-2006) and data on mortality (1997-2009) from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR) using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma). There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA.

  17. Prostate Cancer in South Africa: Pathology Based National Cancer Registry Data (1986–2006) and Mortality Rates (1997–2009)

    Science.gov (United States)

    Babb, Chantal; Urban, Margaret; Kielkowski, Danuta; Kellett, Patricia

    2014-01-01

    Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA) from the pathology based National Cancer Registry (1986–2006) and data on mortality (1997–2009) from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR) using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma). There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA. PMID:24955252

  18. Accuracy of Self-Reported Breast Cancer Information among Women from the Ontario Site of the Breast Cancer Family Registry

    Directory of Open Access Journals (Sweden)

    Andriana Barisic

    2012-01-01

    Full Text Available Obtaining complete medical record information can be challenging and expensive in breast cancer studies. The current literature is limited with respect to the accuracy of self-report and factors that may influence this. We assessed the agreement between self-reported and medical record breast cancer information among women from the Ontario site of the Breast Cancer Family Registry. Women aged 20–69 years diagnosed with incident breast cancer 1996–1998 were identified from the Ontario Cancer Registry, sampled on age and family history. We calculated kappa statistics, proportion correct, sensitivity, specificity, and positive and negative predictive values and conducted unconditional logistic regression to examine whether characteristics of the women influenced agreement. The proportions of women who correctly reported having received a broad category of therapy (hormone therapy, chemotherapy, radiation, or surgery as well as sensitivity and specificity were above 90%, and the kappa statistics were above 0.80. The specific type of hormonal or chemotherapy was reported with low-to-moderate agreement. Aside from recurrence, no factors were consistently associated with agreement. Thus, most women were able to accurately report broad categories of treatment but not necessarily specific treatment types. The finding of this study can aid researchers in the use and design of self-administered treatment questionnaires.

  19. Increasing Trend in Colorectal Cancer Incidence in the Southeast of Iran 2003-2013: A Population Based Cancer Registry Study.

    Science.gov (United States)

    Baniasadi, Nadieh; Moghtader, Elahe; Khajehkazemi, Razieh; Mohebbi, Elham

    2015-01-01

    Rates based on age-adjusted incidence of colorectal cancers over a 10-year period in Kerman, the biggest province of Iran, were estimated from 2003 to 2013. Data were obtained from the population-based cancer registry unit of Kerman University of Medical Sciences (CR-KMU). Information included age, sex, city, ICD-O and year of registry. Our trend analyses cover 3.91% of the Iranian population. The data set comprised cases diagnosed from 2003 to 2013.The population of over 20 years was interpolated using 2003 and 2010 censuses. Then, truncated age-adjusted incidence rates were calculated. Increase was noted from 2003-2009 to 2010-2013 for 731 cancer cases considered in the analysis. The increases was most prominent in 2009. Totally, the frequency of the cancer was greater in males. Moreover, calculating truncated age-adjusted incidence rate indicated that the most prevalent age of colorectal incidence was in the 50-59 year age group except in 2007-2008 and 2012- 2013, when greatest incidences occurred in people aged 60-69 years. Our data revealed that the incidence rates of colorectal cancer have increased over the past decade in our region of Iran.

  20. Measuring the Effect of Improved Medical Facilities and Focused Training on Data Quality and Completeness: An Example from the Gharbiah Population-Based Cancer Registry, Egypt.

    Science.gov (United States)

    Corley, Brittany; Ramadan, Mohamed; Smith, Brittney L; Seifeldein, Ibrahim A; Hablas, Ahmed; Soliman, Amr S

    2015-01-01

    Cancer rates are increasing in low- and middle- income countries. There are a limited number of populationbased cancer registries in Africa and the Egyptian population-based registry in Gharbiah is one of those registries. This registry has followed the standard international registration process and methods since 1999 and has been included in Cancer Incidence in Five Continents volumes IX and X. This article illustrates the reflection of improving medical care in the geographic region of the registry and focused training on enhancing the registry data. The registry area has seen advancement in medical care and cancer diagnostic facilities during the study period. The focused training included 8 different international training sessions over 8 different years for the registrars, administrators, and directors as well as continuing on-the-job training for other registry personnel. These improvements resulted in an overall 40% increase in nonmicroscopic diagnosis of hepatocellular carcinoma, as well as 20%, 10%, and 10% increases in microscopic diagnosis of pancreatic, brain, and lung cancers, respectively, over 9 years. An overall increase of 5% to 10% in subsite diagnosis was also seen for lung, colon, brain, bladder, and breast cancers for the same 9 years. An increase of 3% in grading was seen for solid tumors while 11% was seen for lymphoma. This study showed that low- and middle- income countries can observe higher data quality for cancer registries with improvement in medical care and focused training. PMID:27028092

  1. Connecting the Dots: Linking the National Program of Cancer Registries and the Needs of Survivors and Clinicians.

    Science.gov (United States)

    Ryerson, A Blythe; Eheman, Christie; Styles, Timothy; Rycroft, Randi; Snyder, Claire

    2015-12-01

    Cancer survivors, the medical community, public health professionals, researchers, and policymakers all need information about newly diagnosed cancer cases and deaths to better understand and address the disease burden. CDC collects cancer data on 96% of the U.S. population through the National Program of Cancer Registries. The National Program of Cancer Registries routinely collects data on all cancer occurrences, deaths, and the types of initial treatment received by the patients, and recently CDC has made advances in its cancer surveillance activities that have direct applicability to cancer survivorship research and care. This article examines CDC's innovative uses of the National Program of Cancer Registries infrastructure and data as a recruitment source for survivorship research studies and behavioral interventions; comparative effectiveness and patient-centered outcomes research; and the collection, consolidation, and dissemination of treatment summaries for cancer survivors and their providers. This paper also discusses long-term, idealistic plans for additional data linkages and sharing among public health, providers, and the cancer survivor through innovative concepts such as patient portals and rapid-learning health care. PMID:26590648

  2. Patrones de cambio de coberturas y usos del suelo en la región costa norte de Nayarit (1973-2000

    Directory of Open Access Journals (Sweden)

    César Alejandro Berlanga Robles

    2010-01-01

    Full Text Available Se clasificaron imágenes satelitales Landsat de los años 1973, 1990 y 2000 y posteriormente se realizó una comparación post-clasificatoria, con información digital complementaria, para analizar los cambios ocurridos en la cobertura vegetal y los usos del suelo de la región costa del norte de Nayarit (RCNN. Se produjeron mapas temáticos con nueve clases de cobertura y usos del terreno, con exactitudes totales > 85% y estimadores del coeficiente Kappa de 0.85 a 0.99 para las matrices de error espectral, en tanto que para el caso de las matrices de error real las exactitudes totales y Kappa fueron superiores al 87 y 0.85%, respectivamente. El análisis de las matrices de detección de cambio (1973- 1990, 1990-2000 y 1973-2000 indica que el porcentaje general de cambio en el área en estudio fue próximo al 25% entre periodos y del 30% para el periodo completo (1973-2000. En todos los casos existió una marcada tendencia al incremento de la superficie dedicada a las actividades humanas (agricultura, granjas camaronícolas y uso urbano y una disminución de las superficies con coberturas naturales como los bosques y los manglares.

  3. Burden of head and neck cancers in Kamrup urban district cancer registry of Assam, India: a retrospective study

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    Jagannath Dev Sharma

    2014-08-01

    Full Text Available Background: Head and Neck cancers are basically squamous cell carcinomas. It is the fifth most common cancer and the sixth most common cause of cancer mortality in the world. Incidence of cancer as a whole for all sites is fourth highest in Kamrup Urban District (KUD in males (AAR 185.2 and second highest (AAR 156.3 in females out of all Population Based Cancer Registries (PBCR in India. Incidence of head and neck cancers in KUD is quite high both nationally and internationally. This retrospective study was carried out to assess the incidence pattern of head and neck cancers in Kamrup Urban District of Assam, India for the period of 2009-2011. Methods: Cancer is not notifiable in India, so method of collecting information on cancer was active in PBCR Guwahati. A total of 4416 cases were registered during the three years (1st January 2009- 31st December 2011 of which 2508 were male and 1908 female. Statistical analysis used: Age Adjusted Rate (AAR, Crude Rate (CR and Population pyramids are provided by NCRP-ICMR. Results: The relative proportion of head and neck cancers of total cancer cases registered in KUD constitutes 26% (654/2508 and 12% (225/1908 in male and female respectively. In males cancer of hypopharynx (AAR 14.7 was most common followed by tongue (AAR 9.4 and mouth (AAR 7.7. In females cancer of mouth (AAR 7.6 is most common followed by cancer of tongue (AAR 3.2. Conclusion: The pattern and incidence of various head and neck cancers is of utmost importance for primary prevention and early detection to adequately manage these cancers comprehensively in the community. [Int J Res Med Sci 2014; 2(4.000: 1382-1387

  4. Socio-demographic characteristics of cancer patients: Hospital based cancer registry in a tertiary care hospital of India

    Directory of Open Access Journals (Sweden)

    S Puri

    2014-01-01

    Full Text Available Aim: To determine the socio-demographic characteristics of cancer patients. Materials and Methods: Review of the Cancer registry, and patient interview. Information on socio-demographic profile, medical history, family history and previous treatment, if any, was retrieved from the patient. If the patient couldn′t be contacted then information was taken from pathology/radiotherapy or medical records department. Results: A total of 684 patients participated in the study. More than 40% of males and 53.7% of females were illiterate, P < 0.05. The majority (33.5% of participants were of low socioeconomic status. The most frequently reported cancer (ca in males it was ca lung (40.9 and ca oesophagus (9.8. In females most common cancer were ca breast (23.9 followed by ca cervix (11.7.

  5. Characteristics of BRCA1/2 Mutation-Positive Breast Cancers in Korea: A Comparison Study Based on Multicenter Data and the Korean Breast Cancer Registry

    OpenAIRE

    Yu, Jong-Han; Lee, Jong Won; Son, Byung Ho; Kim, Sung-Won; Park, Sue K.; Lee, Min Hyuk; Kim, Lee Su; Noh, Woo-Chul; Kim, Eun-Kyu; Yoon, Dae Sung; Lee, Jeeyeon; Jung, Jin Hyang; Jung, Sang Seol; Gong, Gyungyup; Ahn, Sei-Hyun

    2014-01-01

    Purpose Mutations in BRCA genes are the main cause of hereditary breast cancer in Korea. The aim of this study was to investigate the characteristics of breast cancers involving BRCA1 (BRCA1 group) and BRCA2 (BRCA2 group) mutations. Methods We retrospectively reviewed the medical records of patients with BRCA1 (BRCA1 group) or BRCA2 (BRCA2 group) mutation positive breast cancer from multiple centers and compared the data to that of the Korean Breast Cancer Society registry (registry group). R...

  6. Profiles of gall bladder cancer reported in the hospital cancer registry of a Regional Cancer Center in the North-East India

    OpenAIRE

    Srabana Misra Bhagabaty; Jagannath Dev Sharma; Manigreeva Krishnatreya; Pintu Nandy; Amal Chandra Kataki

    2014-01-01

    Background: The incidence of gall bladder cancer (GBC) is very high in this part of the world and there is little information on the descriptive epidemiology of GBC from our population. Methods: A retrospective study on the data set of hospital cancer registry was analyzed. The data set consisted of patient information registered during the period of January 2011 to December 2012. The cases included for the present study were histologically confirmed and radiologically diagnosed cases of G...

  7. The epidemiology of neuroendocrine tumors in Taiwan: a nation-wide cancer registry-based study.

    Directory of Open Access Journals (Sweden)

    Hui-Jen Tsai

    Full Text Available BACKGROUND: The epidemiology of neuroendocrine tumors (NETs is not well illustrated, particularly for Asian countries. METHODS: The age-standardized incidence rates and observed survival rates of NETs diagnosed in Taiwan from January 1, 1996 to December 31, 2008 were calculated using data of the Taiwan Cancer Registry (TCR and compared to those of the Norwegian Registry of Cancer (NRC and the US Surveillance, Epidemiology, and End Results (SEER program. RESULTS: During the study period, a total of 2,187 NET cases were diagnosed in Taiwan, with 62% males and a mean age of 57.9 years-old. The age-standardized incidence rate of NETs increased from 0.30 per 100,000 in 1996 to 1.51 per 100,000 in 2008. The most common primary sites were rectum (25.4%, lung and bronchus (20% and stomach (7.4%. The 5-year observed survival was 50.4% for all NETs (43.4% for men and 61.8% for women, P<0.0001. The best 5-year observed survivals for NETs by sites were rectum (80.9%, appendix (75.7%, and breast (64.8%. CONCLUSIONS: Compared to the data of Norway and the US, the age-standardized incidence rate of NETs in Taiwan is lower and the major primary sites are different, whereas the long-term outcome is similar. More studies on the pathogenesis of NETs are warranted to devise preventive strategies and improve treatment outcomes for NETs.

  8. Breast cancer in a multi-ethnic Asian setting : Results from the Singapore-Malaysia hospital-based breast cancer registry

    NARCIS (Netherlands)

    Pathy, Nirmala Bhoo; Yip, Cheng Har; Taib, Nur Aishah; Hartman, Mikael; Saxena, Nakul; Lau, Philip; Bulgiba, Awang M.; Lee, Soo Chin; Lim, Siew Eng; Wong, John E. L.; Verkooijen, Helena M.

    2011-01-01

    Two hospital-based breast cancer databases (University Malaya Medical Center, Malaysia [n = 1513] and National University Hospital, Singapore [n = 2545]) were merged into a regional registry of breast cancer patients diagnosed between 1990 and 2007. A review of the data found 51% of patients diagnos

  9. HIV and cancer registry linkage identifies a substantial burden of cancers in persons with HIV in India.

    Science.gov (United States)

    Godbole, Sheela V; Nandy, Karabi; Gauniyal, Mansi; Nalawade, Pallavi; Sane, Suvarna; Koyande, Shravani; Toyama, Joy; Hegde, Asha; Virgo, Phil; Bhatia, Kishor; Paranjape, Ramesh S; Risbud, Arun R; Mbulaiteye, Sam M; Mitsuyasu, Ronald T

    2016-09-01

    We utilized computerized record-linkage methods to link HIV and cancer databases with limited unique identifiers in Pune, India, to determine feasibility of linkage and obtain preliminary estimates of cancer risk in persons living with HIV (PLHIV) as compared with the general population.Records of 32,575 PLHIV were linked to 31,754 Pune Cancer Registry records (1996-2008) using a probabilistic-matching algorithm. Cancer risk was estimated by calculating standardized incidence ratios (SIRs) in the early (4-27 months after HIV registration), late (28-60 months), and overall (4-60 months) incidence periods. Cancers diagnosed prior to or within 3 months of HIV registration were considered prevalent.Of 613 linked cancers to PLHIV, 188 were prevalent, 106 early incident, and 319 late incident. Incident cancers comprised 11.5% AIDS-defining cancers (ADCs), including cervical cancer and non-Hodgkin lymphoma (NHL), but not Kaposi sarcoma (KS), and 88.5% non-AIDS-defining cancers (NADCs). Risk for any incident cancer diagnosis in early, late, and combined periods was significantly elevated among PLHIV (SIRs: 5.6 [95% CI 4.6-6.8], 17.7 [95% CI 15.8-19.8], and 11.5 [95% CI 10-12.6], respectively). Cervical cancer risk was elevated in both incidence periods (SIRs: 9.6 [95% CI 4.8-17.2] and 22.6 [95% CI 14.3-33.9], respectively), while NHL risk was elevated only in the late incidence period (SIR: 18.0 [95% CI 9.8-30.20]). Risks for NADCs were dramatically elevated (SIR > 100) for eye-orbit, substantially (SIR > 20) for all-mouth, esophagus, breast, unspecified-leukemia, colon-rectum-anus, and other/unspecified cancers; moderately elevated (SIR > 10) for salivary gland, penis, nasopharynx, and brain-nervous system, and mildly elevated (SIR > 5) for stomach. Risks for 6 NADCs (small intestine, testis, lymphocytic leukemia, prostate, ovary, and melanoma) were not elevated and 5 cancers, including multiple myeloma not seen.Our study demonstrates the feasibility of

  10. Epidemiological Aspects of Head and Neck Cancers Based on Radiotherapy Registry in Hospital of Hasanuddin University South of Sulawesi Indonesia

    OpenAIRE

    A. St. Asmidar Anas; Bachtiar Murtala; Sri Oktawati; Harlina Ilmar

    2016-01-01

    The aim of this retrospective study was to identify epidemiological aspect of head and neck cancer defined as reported from a hospital-based radiotherapy registry in Hospital of Hasanuddin University South of Sulawesi Indonesia. The data were collected from medical records patient who treated with radiation therapy in a period of 2014-2015 with a view toward analyzing the sex, age, and site of cancers. Results described that a total of 187 cases were collected during the study period. The mea...

  11. Age-specific interval breast cancers in Japan. Estimation of the proper sensitivity of screening using a population-based cancer registry

    International Nuclear Information System (INIS)

    The age-specific sensitivity of a screening program was investigated using a population-based cancer registry as a source of false-negative cancer cases. A population-based screening program for breast cancer was run using either clinical breast examinations (CBE) alone or mammography combined with CBE in the Miyagi Prefecture from 1997 to 2002. Interval cancers were newly identified by linking the screening records to the population-based cancer registry to estimate the number of false-negative cases of screening program. Among 112071 women screened by mammography combined with CBE, the number of detected cancers, false-negative cases and the sensitivity were 289, 22 and 92.9%, respectively, based on the reports from participating municipalities. The number of newly found false-negative cases and corrected sensitivity when using the registry were 34 and 83.8%, respectively. In detected cancers, the sensitivity of screening by mammography combined with CBE in women ranging from 40 to 49 years of age based on a population-based cancer registry was much lower than that in women 50-59 and 60-69 years of age (40-49: 18, 71.4%, 50-59: 19, 85.8%, 60-69: 19, 87.2%). These data suggest that the accurate outcome of an evaluation of breast cancer screening must include the use of a population-based cancer registry for detecting false-negative cases. Screening by mammography combined with CBE may therefore not be sufficiently sensitive for women ranging from 40 to 49 years of age. (author)

  12. Clinical importance of Familial Pancreatic Cancer Registry in Japan: a report from kick-off meeting at International Symposium on Pancreas Cancer 2012.

    Science.gov (United States)

    Wada, Keita; Takaori, Kyoichi; Traverso, L William; Hruban, Ralph H; Furukawa, Toru; Brentnall, Teresa A; Hatori, Takashi; Sano, Keiji; Takada, Tadahiro; Majima, Yoshiyuki; Shimosegawa, Tooru

    2013-08-01

    Pancreatic cancer is still a highly lethal disease with a 5-year survival rate of approximately 5 %. Early detection offers one of the best hopes for improving survival. Previous cohort studies and case-control studies showed that 4-10 % of pancreatic cancers have a hereditary basis, and individuals with a family history have an increased risk of developing pancreatic and extra-pancreatic malignancies. Since individuals with a family history of pancreatic cancer and those with a known genetic syndrome that predisposes to pancreatic cancer will be the first to benefit from early detection tests as they become available, familial pancreatic cancer (FPC) registries have been established in the US and Europe, but not yet in Japan. Such registries form the basis for epidemiological studies, clinical trials, and basic research on familial pancreatic cancer. There is a need for FPC registries in Japan as cancer risk varies among different populations and discoveries made in Western populations may not translate to the Japanese population. These registries in Japan will align with ongoing international efforts and add to a better understanding of the natural history, risk factors, screening strategies, and responsible genes, for improving survival of this dismal disease.

  13. Cancer trends in Kashmir; common types, site incidence and demographic profiles: National Cancer Registry 2000-2012

    Directory of Open Access Journals (Sweden)

    M A Wani

    2014-01-01

    Full Text Available Background: An assessment of cancer incidence in population is required for prevention, early diagnosis, treatment and resource allocation. This will also guide in the formation of facilities for diagnosis, treatment, rehabilitation and follow-up for these patients. The demographic trend of cancer will help to identify common types and etiological factors. Efforts at clinical, research and administrative levels are needed to overcome this problem. Settings and Design: Present retro prospective study was conducted in regional cancer center of a tertiary care hospital. Materials and Methods: After permission from ethics committee, a retro prospective study of 1 year duration was undertaken to study the profile of cancer patients and to compare it with other cancer registries in India. Statistical Analysis: Pearson′s Chi-square test and simple linear regression were used. Statistical Package for the Social Sciences version-16 (University of Bristol information services (www.bristol.ac.uk/is/learning/resources was used. RESULTS: The overall incidence of cancer in Kashmir is on the increase and common sites of cancer are esophagus and gastroesophageal (GE junction, lung, stomach, colorectal, lymphomas, skin, laryngopharynx, acute leukemias, prostate and brain in males.In females common sites are breast, esophagus and GE junction, ovary, colorectal, stomach, lung, gallbladder, lymphomas, acute leukemias and brain. Conclusion: Cancers of esophagus, stomach and lungs have a high incidence both in men and women in Kashmir. Future studies on sources and types of environmental pollution and exposures in relation to these cancers may improve our understanding of risk factors held responsible for causation of these malignancies in this region. This will help in the allocation of available resources for prevention and treatment strategies.

  14. Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study

    Science.gov (United States)

    Keegan, Theresa H.M.; Lichtensztajn, Daphne Y.; Kato, Ikuko; Kent, Erin E.; Wu, Xiao-Cheng; West, Michelle M.; Hamilton, Ann S.; Zebrack, Brad; Bellizzi, Keith M.; Smith, Ashley W.

    2012-01-01

    Purpose We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. Methods We studied 523 AYAs recruited from 7 population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma in 2007-08. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. Results More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-White race/ethnicity, and participants who reported less than excellent general health, or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥ 3 physical treatment-related symptoms. Conclusions Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. Implications for Cancer Survivors We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals. PMID:22457219

  15. Worry Is Good for Breast Cancer Screening: A Study of Female Relatives from the Ontario Site of the Breast Cancer Family Registry

    OpenAIRE

    Li Rita Zhang; Chiarelli, Anna M; Gord Glendon; Lucia Mirea; Knight, Julia A.; Andrulis, Irene L.; Paul Ritvo

    2012-01-01

    Background. Few prospective studies have examined associations between breast cancer worry and screening behaviours in women with elevated breast cancer risks based on family history. Methods. This study included 901 high familial risk women, aged 23–71 years, from the Ontario site of the Breast Cancer Family Registry. Self-reported breast screening behaviours at year-one followup were compared between women at low (N = 305), medium (N = 433), and high (N = 163) levels of baseline breast canc...

  16. Clinical Stages in Patients with Primary and Subsequent Cancers Based on the Czech Cancer Registry 1976–2005

    Science.gov (United States)

    Štampach, Radim; Dítě, Petr; Kozel, Jiří; Horváth, Teodor; Kubíček, Petr

    2013-01-01

    Of 1,486,984 new cancers registered in the Czech Cancer Registry in 1976-2005, 290,312 (19.5%) were multiple malignant neoplasms (MMNs), of which there were 65,292 primary and 89,796 subsequent cases in men and 59,970 primary and 75,254 subsequent cases in women. The duplicities were higher in women, and the triplicities and others (3–6 MMNs) were higher in men. The most frequent diagnoses were the primary cancers of skin, gastrointestinal and urinary tract, male genital organs, respiratory tract in men, and cancers of skin, breast, female genital organs, and gastrointestinal tract in women. The analysis of the early and advanced clinical stages shows that the number of subsequent advanced stages increased after primary advanced stages. Their time-age-space distributions visualized maps of MMNs in 14 Czech regions. These results support the improvement of algorithms of dispensary care for the early detection of the subsequent neoplasms. PMID:23936674

  17. The Spatial Distribution of Cancer Incidence in Fars Province: A GIS-Based Analysis of Cancer Registry Data

    Science.gov (United States)

    Goli, Ali; Oroei, Mahbobeh; Jalalpour, Mehdi; Faramarzi, Hossein; Askarian, Mehrdad

    2013-01-01

    Background: Cancer is a major health problem in the developing countries. Variations of its incidence rate among geographical areas are due to various contributing factors. This study was performed to assess the spatial patterns of cancer incidence in the Fars Province, based on cancer registry data and to determine geographical clusters. Methods: In this cross sectional study, the new cases of cancer were recorded from 2001 to 2009. Crude incidence rate was estimated based on age groups and sex in the counties of the Fars Province. Age-standardized incidence rates (ASR) per 100,000 was calculated in each year. Spatial autocorrelation analysis was performed in measuring the geographic patterns and clusters using geographic information system (GIS). Also, comparisons were made between ASRs in each county. Results: A total of 28,411 new cases were diagnosed with cancer during 2001-2009 in the Fars Province, 55.5% of which were men. The average age was 61.6 ± 0.5 years. The highest ASR was observed in Shiraz, which is the largest county in Fars. The Moran's Index of cancer was significantly clustered in 2004, 2005, and 2006 in total, men, and women. The type of spatial clustering was high-high cluster, that to indicate from north-west to south-east of Fars Province. Conclusions: Analysis of the spatial distribution of cancer shows significant differences from year to year and between different areas. However, a clear spatial autocorrelation is observed, which can be of great interest and importance to researchers for future epidemiological studies, and to policymakers for applying preventive measures. PMID:24319551

  18. Cancer survival among children of Turkish descent in Germany 1980–2005: a registry-based analysis

    Directory of Open Access Journals (Sweden)

    Razum Oliver

    2008-11-01

    Full Text Available Abstract Background Little is known about the effect of migrant status on childhood cancer survival. We studied cancer survival among children of Turkish descent in the German Cancer Childhood Registry, one of the largest childhood cancer registries worldwide. Methods We identified children of Turkish descent among cancer cases using a name-based approach. We compared 5-year survival probabilities of Turkish and other children in three time periods of diagnosis (1980–87, 1988–95, 1996–2005 using the Kaplan-Meier method and log-rank tests. Results The 5-year survival probability for all cancers among 1774 cases of Turkish descent (4.76% of all 37.259 cases was 76.9% compared to 77.6% in the comparison group (all other cases; p = 0.15. We found no age- or sex-specific survival differences (p-values between p = 0.18 and p = 0.90. For the period 1980–87, the 5-year survival probability among Turkish children with lymphoid leukaemia was significantly lower (62% versus 75.8%; p Conclusion Our results suggest that nowadays Turkish migrant status has no bearing on the outcome of childhood cancer therapies in Germany. The inclusion of currently more than 95% of all childhood cancer cases in standardised treatment protocols is likely to contribute to this finding.

  19. Representativeness of two sampling procedures for an internet intervention targeting cancer-related distress: a comparison of convenience and registry samples

    OpenAIRE

    Owen, Jason E.; Bantum, Erin O'Carroll; Criswell, Kevin; Bazzo, Julie; Gorlick, Amanda; Stanton, Annette L.

    2013-01-01

    Internet interventions often rely on convenience sampling, yet convenience samples may differ in important ways from systematic recruitment approaches. The purpose of this study was to evaluate potential demographic, medical, and psychosocial differences between Internet-recruited and registry-recruited cancer survivors in an Internet-based intervention. Participants were recruited from a cancer registry (n = 80) and via broad Internet outreach efforts (n = 160). Participants completed a set ...

  20. Occupational risk factors for testicular cancer: a registry-based case-control study in Rhineland Palatinate – Germany

    Science.gov (United States)

    Yousif, Lamyaa; Hammer, Gaël P.; Emrich, Katharina; Blettner, Maria; Zeeb, Hajo

    2013-01-01

    Objectives: Testicular cancer affects mainly men below the age of 50. An association with occupation and social status has been suggested but risk factors are not well understood. A registry-based case-control study focusing on occupation was performed in Germany. Methods: All 348 testicular cancer cases with available gainful occupational information registered between 2000 and 2005; as well as 564 suitable controls (from a pool of other cancers) were drawn from the Cancer Registry of Rhineland-Palatinate. Unconditional logistic regression was used to compute odds ratios (OR) and associated 95% confidence intervals (CI). Results: Slightly elevated OR were observed for technicians and related professionals (OR 1.62, 95% CI 1.00–2.63) and for clerical support workers (OR 1.71, 95% CI 1.14–2.56). This increase was highest in the age group 20–50 for technicians (OR 2.02, 95% CI 1.23–3.33) and clerks (OR 2.00, 95% CI 1.30–3.09), respectively. An association with testicular cancer was observed for no other occupation. Conclusion: An increased risk of testicular cancer was observed for technicians and related professionals and clerical support workers. This could be related to socioeconomic status or sedentary life style, two factors that were identified in previous studies. While the feasibility of a purely registry-based study was shown, missing occupational data and the choice of cancer controls represent challenges to the validity of this approach. PMID:24265602

  1. Lung Cancer: A survival analysis using data from the National Cancer Registry Uruguay of patients diagnosed in 2008

    International Nuclear Information System (INIS)

    Full text: Objective: To analyze survival (S V)from cancer in a cohort of patients Uruguayan drawn from the population-based registry and its association with clinical predictors and welfare. Materials and Methods: Retrospective analysis of patients in which there has been diagnosis of lung cancer in 2008. From the data base incidence and mortality of the 2008 RNC observed S V is calculated and constructed Kaplan Meier curves. We compare the S V as clinical variables (sex, age, extent lesion, histological type)and health care (patients seen in mutual and services health state in Montevideo and the Interior)by log rank test. Analysis is performed multivariate (Cox regression). Excluded from analysis identified patients only by death certificate (D CO)Results: We analyzed 1077 cases. The median S V entire cohort was 293 days (approx 9 months). In univariate analysis were statistically significantly sex, age, disease extension and some histological types. There were statistically S V significantly among patients treated at public and private centers assisted in Montevideo and the inside. In multivariate analysis, significant persists association with age, disease extension and assistance in public or private centers. Conclusions: In this cohort demonstrates S V comparable lung cancer to international series and an association with clinical variables consistent with them. Statistically significant differences were observed between patients assisted in public and private, which warrants further deeper analysis to determine the cause of this difference,

  2. Quality of venous thromboembolism diagnoses among prostate cancer patients in the Danish National Registry of Patients

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    Drljevic A

    2014-10-01

    Full Text Available Aska Drljevic,1 Michael Borre,2 Morten Høyer,3 Vera Ehrenstein,4 Mary Nguyen-Nielsen4 1Department of Pharmacology, 2Department of Urology, 3Department of Oncology, 4Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Background and aim: It is well established that cancer patients have an increased risk of venous thromboembolism (VTE. However, no previous study has examined the quality of VTE diagnoses related to cancer patients in the Danish National Registry of Patients (DNRP. To support future studies on cancer and risk of VTE, this study aimed to estimate the positive predictive value (PPV of VTE diagnoses among prostate cancer (PC patients registered in the DNRP. Materials and methods: We conducted a validation study using data from hospitals within the Central Denmark Region, which covers a population of 1.3 million people. Using the DNRP, we identified a total of 120 PC patients registered with VTE within the period 1995–2012. We also identified a random sample of 120 PC patients with no VTE registration within the same period. Therefore, a total of 240 patients were selected for medical chart review. We compared data from the DNRP to data collected from medical record review (ie, reference standard. We then computed PPV, sensitivity, and specificity with corresponding 95% confidence intervals (CIs using the Jeffreys method. Results: The final study sample included 232 PC patients, of which 115 were registered with VTE and 117 had no registration of VTE in the DNRP. We found the overall PPV of VTE diagnoses in the DNRP to be 86.1% (95% CI 78.9%–91.5%. Sensitivity was 98.0% (95% CI 93.8%–99.6%, and specificity was 87.8% (95% CI 81.4%–92.6%. We also found the PPV of incident PC diagnoses in the DNRP to be 98.3% (95% CI 96.1%–99.4%. Conclusion: For PC patients, the registration of VTE diagnoses in the DNRP is associated with a high PPV. We provide evidence that data from the DNRP are valid for studies

  3. A Nation-Wide Cancer Registry-Based Study of Adenosquamous Carcinoma in Taiwan.

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    Yuan-Tzu Lan

    Full Text Available Adenosquamous carcinoma (ASC is a rare disease involving various organs, yet there are no large-scale population-based comparative studies on ASC among different organs.The incidence and overall survival of ASC among various organs in cases diagnosed in Taiwan from January 1, 2003 to December 31, 2010 were calculated and compared using data from the Taiwan Cancer Registry (TCR. The various organs were classified and divided into three different systems: the female reproductive, respiratory, and alimentary systems. Survival analysis were also compared among 30,850 patients diagnosed as ASC, adenocarcinoma (AC or squamous cell carcinoma (SCC in organs with frequent ASC.During the study period, a total of 576 ASC cases were diagnosed in Taiwan. The most common primary system was respiratory (73.8%, followed by alimentary (16.2% and female reproductive (10%. The overall survival were significantly higher for cases involving the female reproductive system, followed by the respiratory and alimentary systems (P = 0.016. The median overall survival were worse in males than females for cases involving the respiratory system (22.4 vs. 31.8 months, P = 0.044. Multivariate analysis showed that age ≧ 65, more advanced T and N categories were independent unfavorable prognostic factors of overall survival in ASC. ASC histology is an independent unfavorable prognostic factor compared with AC and SCC.ASC at an old age and more advanced T and N categories were found to be associated with a poor prognosis.

  4. Cancer incidence in Bucaramanga Metropolitan Area, 2000-2004. First five years report from population based cancer registry of Metropolitan Area of Bucaramanga.

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    Erika Eliana Meza Durán

    2007-11-01

    Full Text Available Cancer is one of the most common chronic diseases that cause high morbidity and mortality. In the evaluation of all illnessand its impact on the community, a surveillance system becomes necessary to allows us to know its incidence. Cancersurveillance is achieved by the population-based cancer registry. Methodology: The Population Based Cancer Registry ofMetropolitan Area of Bucaramanga (RPC-AMB collected information from the years 2000 to 2004, in patients with anymalignant cancer the which include both invasive and in situ behavior in addition to reside within this geographical area . TheCancer Registry also collects data on brain and nervous system tumors classified as benign or those that have uncertainbehavior. Basal cell cancers of the skin were included during the two first years as well as all the intraepithelial neoplasm ofthe cervix. Active collections of information at all sources by registry staff were made (Hospitals, Health care institutions,especially oncology centers and Pathology and Hematology Laboratories and some specialist in oncology attention. Theinclusion approaches are verified and collects data on specific sociodemographic information (age, gender, residence, placeof birth, etc. and on the anatomic site of the tumor, the cell type of the cancer, behavior and extension on each individualdiagnosed with cancer. Each case was coded using the International Classification of Diseases Oncology Third Edition (ICDO-3, for topographical and morphological code. The data was entered into a computer with CanReg-4 software that is aconfigurable computer program designed for cancer registration in population-based registries and was provided as aservice by the Descriptive Epidemiology Unit to members of the International Association of Cancer Registries. This softwareprovides the number of cancer cases (frequency and the incidence rates. The quality control included exhaustiveness of thecases and information, verification of the

  5. Quality of Life and Mortality of Long-Term Colorectal Cancer Survivors in the Seattle Colorectal Cancer Family Registry.

    Directory of Open Access Journals (Sweden)

    Scott V Adams

    Full Text Available Because most colorectal cancer patients survive beyond five years, understanding quality of life among these long-term survivors is essential to providing comprehensive survivor care. We sought to identify personal characteristics associated with reported quality of life in colorectal cancer survivors, and sub-groups of survivors potentially vulnerable to very low quality of life.We assessed quality of life using the Veterans RAND 12-item Health Survey within a population-based sample of 1,021 colorectal cancer survivors in the Seattle Colorectal Cancer Family Registry, approximately 5 years post-diagnosis. In this case-only study, mean physical component summary scores and mental component summary scores were examined with linear regression. To identify survivors with substantially reduced ability to complete daily tasks, logistic regression was used to estimate odds ratios for "very low" summary scores, defined as a score in the lowest decile of the reference US population. All cases were followed for vital status following QoL assessment, and mortality was analyzed with Cox proportional hazards regression.Lower mean physical component summary score was associated with older age, female sex, obesity, smoking, and diabetes or other co-morbidity; lower mean mental component summary score was associated with younger age and female sex. Higher odds of very low physical component summary score was associated with older age, obesity, less education, smoking, co-morbidities, and later stage at diagnosis; smoking was associated with higher odds of very low mental component summary score. A very low physical component score was associated with higher risk of mortality (hazard ratio (95% confidence interval: 3.97 (2.95-5.34.Our results suggest that identifiable sub-groups of survivors are vulnerable to very low physical components of quality of life, decrements that may represent meaningful impairment in completing everyday tasks and are associated with

  6. Nanomaterial Registry

    Data.gov (United States)

    U.S. Department of Health & Human Services — The Nanomaterial Registry compiles data from multiple databases into a single resource. The goal of this resource is to establish a curated nanomaterial registry,...

  7. Transition probabilities of HER2-positive and HER2-negative breast cancer patients treated with Trastuzumab obtained from a clinical cancer registry dataset.

    Science.gov (United States)

    Pobiruchin, Monika; Bochum, Sylvia; Martens, Uwe M; Kieser, Meinhard; Schramm, Wendelin

    2016-06-01

    Records of female breast cancer patients were selected from a clinical cancer registry and separated into three cohorts according to HER2-status (human epidermal growth factor receptor 2) and treatment with or without Trastuzumab (a humanized monoclonal antibody). Propensity score matching was used to balance the cohorts. Afterwards, documented information about disease events (recurrence of cancer, metastases, remission of local/regional recurrences, remission of metastases and death) found in the dataset was leveraged to calculate the annual transition probabilities for every cohort. PMID:27054173

  8. Meat intake, cooking methods, dietary carcinogens, and colorectal cancer risk: findings from the Colorectal Cancer Family Registry

    International Nuclear Information System (INIS)

    Diets high in red meat and processed meats are established colorectal cancer (CRC) risk factors. However, it is still not well understood what explains this association. We conducted comprehensive analyses of CRC risk and red meat and poultry intakes, taking into account cooking methods, level of doneness, estimated intakes of heterocyclic amines (HCAs) that accumulate during meat cooking, tumor location, and tumor mismatch repair proficiency (MMR) status. We analyzed food frequency and portion size data including a meat cooking module for 3364 CRC cases, 1806 unaffected siblings, 136 unaffected spouses, and 1620 unaffected population-based controls, recruited into the CRC Family Registry. Odds ratios (OR) and 95% confidence intervals (CI) for nutrient density variables were estimated using generalized estimating equations. We found no evidence of an association between total nonprocessed red meat or total processed meat and CRC risk. Our main finding was a positive association with CRC for pan-fried beefsteak (Ptrend < 0.001), which was stronger among MMR deficient cases (heterogeneity P = 0.059). Other worth noting associations, of borderline statistical significance after multiple testing correction, were a positive association between diets high in oven-broiled short ribs or spareribs and CRC risk (Ptrend = 0.002), which was also stronger among MMR-deficient cases, and an inverse association with grilled hamburgers (Ptrend = 0.002). Our results support the role of specific meat types and cooking practices as possible sources of human carcinogens relevant for CRC risk

  9. Cancer incidence among alcoholic liver disease patients in Finland: A retrospective registry study during years 1996-2013.

    Science.gov (United States)

    Sahlman, Perttu; Nissinen, Markku; Pukkala, Eero; Färkkilä, Martti

    2016-06-01

    Both alcohol abuse and liver cirrhosis are known risk factors for various cancers. This article was aimed to assess the long-term risk of malignancies among patients with severe alcoholic liver disease (ALD), i.e., alcoholic liver cirrhosis and alcoholic hepatitis. A cohort of 8,796 male and 3,077 female ALD patients from 1996 to 2012 was identified from the Finnish National Hospital Discharge Register. This nationwide cohort was combined with the data from the Finnish Cancer Registry for incidence of malignancies during the years 1996-2013. The cancer cases diagnosed were compared with the number of cancers in the general population. The number of malignancies in our cohort was 1,052 vs. 368 expected. There was statistically significant excess of cancers of the liver, (standardized incidence ratio [SIR] 59.20; 95% CI 53.11-65.61), pancreas (SIR 3.71; 95% CI 2.72-4.94), pharynx (SIR 9.25; 95% CI 6.05-13.56), mouth (SIR 8.31; 95% CI 4.84-13,29), oesophagus (SIR 7.92; 95% CI 5.49-11.07), tongue (SIR 7,21; 95% CI 3.60-12.89), larynx (SIR 5.20; 95% CI 2.77-8.89), lung (SIR 2.77; 95% CI 2.27-3.32), stomach (SIR 2.76; 95% CI 1.79-4.07), kidney (SIR 2.69; 95% CI 1.84-3.79) and colon (SIR 2.33; 95% CI 1.70-3.11). There was no decreased risk of any cancer among ALD patients. Severe ALD is associated with markedly increased risk of malignancies. The risk is especially high for hepatocellular carcinoma, but also significantly increased for cancers of the upper aerodigestive tract, pancreas and kidneys, and warrants cancer surveillance in selected cases. PMID:26756434

  10. Breast cancer incidence and survival: registry-based studies of long-term trends and determinants

    NARCIS (Netherlands)

    M.W.J. Louwman (Marieke)

    2007-01-01

    markdownabstract__Abstract__ Breast cancer is the most frequent cancer among women in the Netherlands, and it is the most important cause of cancer death. Between age 35 and 55 about 20% of all deaths among women is due to breast cancer.1 The age-standardised incidence rate is among the highest in

  11. Mast cell tumours and other skin neoplasia in Danish dogs - data from the Danish Veterinary Cancer Registry

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    Kristensen Annemarie T

    2010-01-01

    Full Text Available Abstract Background The Danish Veterinary Cancer Registry (DVCR was established in May 2005 to gather information about neoplasms in the Danish dog and cat populations. Practitioners from more than 60 clinics throughout Denmark have submitted data on these species. The objectives of the current study were, with a special focus on mast cell tumours (MCT to investigate the occurrence, gender distribution, biological behaviour, locations, types, the diagnostic method used and treatment of skin neoplasms in dogs based on information reported to the DVCR. Methods From May 15th 2005 through February 29th 2008, reports on a total of 1,768 canine cases of neoplasia in the skin, subcutis or adnexa were submitted. Of these, 765 cases (43% were confirmed by cytology or histopathology. Results The majority of dogs had a benign neoplasm (66% while 21% were cases of malignant neoplasia. The most commonly encountered malignant neoplasms were MCT and soft tissue sarcomas and for benign neoplasms, lipomas and histiocytomas were the most common. The location of the neoplasms were primarily in the cutis, subcutis or in the perianal region. The occurrence, gender distribution, biological behaviour and location of canine skin neoplasias in Denmark were similar to earlier reports, although some national variations occurred. A correlation between grade of MCT and the proportion of cases treated surgically was observed. Conclusions Population based cancer registries like the DVCR are of importance in the collection of non-selected primary information about occurrence and distribution of neoplasms. The DVCR provides detailed information on cases of skin neoplasms in dogs and may serve as a platform for the study of sub-sets of neoplastic diseases (e.g. MCT or subgroups of the canine population (e.g. a specific breed.

  12. Adjuvant Brachytherapy Removes Survival Disadvantage of Local Disease Extension in Stage IIIC Endometrial Cancer: A SEER Registry Analysis

    International Nuclear Information System (INIS)

    Purpose: To assess the role of radiotherapy (RT) in women with Stage IIIC endometrial cancer. Methods and Materials: The 17-registry Survival, Epidemiology, and End Results (SEER) database was searched for patients with lymph node-positive non-Stage IV epithelial endometrial cancer diagnosed and treated between 1988 and 1998. Two subgroups were identified: those with organ-confined Stage IIIC endometrial cancer and those with Stage IIIC endometrial cancer with direct extension of the primary tumor. RT was coded as external beam RT (EBRT) or brachytherapy (BT). Observed survival (OS) was reported with a minimum of 5 years of follow-up; the survival curves were compared using the log-rank test. Results: The therapy data revealed 611 women with Stage IIIC endometrial cancer during this period. Of these women, 51% were treated with adjuvant EBRT, 21% with EBRT and BT, and 28% with no additional RT (NAT). Of the 611 patients, 293 had organ-confined Stage IIIC endometrial cancer and 318 patients had Stage IIIC endometrial cancer with direct extension of the primary tumor. The 5-year OS rate for all patients was 40% with NAT, 56% after EBRT, and 64% after EBRT/BT. Adjuvant RT improved survival compared with NAT (p <0.001). In patients with organ-confined Stage IIIC endometrial cancer, the 5-year OS rate was 50% for NAT, 64% for EBRT, and 67% for EBRT/BT. Again, adjuvant RT contributed to improved survival compared with NAT (p = 0.02). In patients with Stage IIIC endometrial cancer and direct tumor extension, the 5-year OS rate was 34% for NAT, 47% for EBRT, and 63% for EBRT/BT. RT improved OS compared with NAT (p <0.001). Also, in this high-risk subgroup, adding BT to EBRT was superior to EBRT alone (p = 0.002). Conclusion: Women with Stage IIIC endometrial cancer receiving adjuvant EBRT and EBRT/BT had improved OS compared with patients receiving NAT. When direct extension of the primary tumor was present, the addition of BT to EBRT was even more beneficial

  13. Socioeconomic disparity in breast cancer detection in Hong Kong--a high income city: retrospective epidemiological study using the Breast Cancer Registry.

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    Josette Sin Yee Chor

    Full Text Available BACKGROUND: It is not known whether socioeconomic disparities affect the detection of breast cancer in Asian countries where the incidence of breast cancer is a rising trend. In this study, we explore the socioeconomic profiles of women and the stage of the disease at the time of diagnosis in breast cancer patients aged 40 or over in Hong Kong. METHOD: During the period 2008 to 2011, 5393 breast cancer patients registered with the Hong Kong Breast Cancer Registry. Participants and their clinicians were asked to complete standardised questionnaires including patient socio-demographics, health history and risk factors, the course of the disease, post-treatment physical discomfort and psychosocial impact, follow-up recurrence and survival status. RESULTS: Monthly household incomes, educational levels and the practice of regular screening are independently associated with the stage of the disease at diagnosis. Higher socioeconomic status and a higher educational level were associated with an earlier stage of the disease at the time of diagnosis. Yearly clinical examinations, ultrasound and mammographic screening every 2 to 3 years were significantly associated with the earlier detection of breast cancer. CONCLUSION: There were socioeconomic disparities among Hong Kong women who were found to have breast cancer. Population-based screening policies, including raising awareness among women at risk, should be implemented.

  14. The incidence rate of corpus uteri cancer among females in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

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    Alghamdi IG

    2014-01-01

    Full Text Available Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, UK; 2Ministry of Health, General Directorate of Health Affairs, Al-Baha, Kingdom of Saudi Arabia; 3Research and Development, Lincoln Hospital, Lincolnshire Hospitals NHS Trust, Lincoln, UK Background: The present study reviews the epidemiological data on corpus uteri cancer among Saudi women, including its frequency, crude incidence rate, and age-standardized incidence rate (ASIR, adjusted by region and year of diagnosis. Methods: A retrospective, descriptive epidemiological analysis was conducted of all the corpus uteri cancer cases recorded in the Saudi Cancer Registry between January 2001 and December 2008. The statistical analyses were performed using descriptive statistics, analysis of variance, Poisson regression, and a simple linear model. Results: A total of 1,060 corpus uteri cancer cases were included. Women aged 60–74 years of age were most affected by the disease. The region of Riyadh in Saudi Arabia had the highest overall ASIR, at 4.4 cases per 100,000 female patients, followed by the eastern region, at 4.2, and Makkah, at 3.7. Jazan, Najran, and Qassim had the lowest average ASIRs, ranging from 0.8 to 1.4. A Poisson regression model using Jazan as the reference revealed that the corpus uteri cancer incidence rate ratio was significantly higher for the regions of Makkah, at 16.5 times (95% confidence interval [CI]: 8.0–23.0, followed by Riyadh, at 16.0 times (95% CI: 9.0–22.0, and the eastern region, at 9.9 times (95% CI: 5.6–17.6. The northern region experienced the highest changes in ASIRs of corpus uteri cancer among female Saudi patients between 2001 and 2008. Conclusion: There was a slight increase in the crude incidence rates and ASIRs for corpus uteri cancer in Saudi Arabia between 2001 and 2008. Older Saudi women were most affected by the disease. Riyadh, the eastern region, and Makkah

  15. Positive predictive values of the coding for bisphosphonate therapy among cancer patients in the Danish National Patient Registry

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    Nielsson MS

    2012-08-01

    Full Text Available Malene Schou Nielsson,1 Rune Erichsen,1 Trine Frøslev,1 Aliki Taylor,2 John Acquavella,2 Vera Ehrenstein11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; 2Center for Observational Research International, Amgen Ltd Thousand Oaks, CA, USA Background: The purpose of this study was to estimate the positive predictive value (PPV of the coding for bisphosphonate treatment in selected cancer patients from the Danish National Patient Registry (DNPR.Methods: Through the DNPR, we identified all patients with recorded cancer of the breast, prostate, lung, kidney, and with multiple myeloma. We restricted the study sample to patients with bisphosphonate treatment recorded during an admission to Aalborg Hospital, Denmark, from 2005 through 2009. We retrieved and reviewed medical records of these patients from the initial cancer diagnosis onwards to confirm or rule out bisphosphonate therapy. We calculated the PPV of the treatment coding as the proportion of patients with confirmed bisphosphonate treatment.Results: We retrieved and reviewed the medical records of 60 cancer patients with treatment codes corresponding to bisphosphonate therapy. Recorded code corresponded to treatment administered intravenously for 59 of 60 patients, corresponding to a PPV of 98.3% (95% confidence interval 92.5–99.8. In the remaining patient, bisphosphonate treatment was also confirmed but was an orally administered bisphosphonate; thus, the treatment for any bisphosphonate regardless of administration was confirmed for all 60 patients (PPV of 100%, 95% confidence interval 95.9–100.0.Conclusion: The PPV of bisphosphonate treatment coding among cancer patients in the DNPR is very high and the recorded treatment nearly always corresponds to intravenous administration.Keywords: bisphosphonate, neoplasm metastases, predictive value of tests, validation studies

  16. Evaluation of an Automated Information Extraction Tool for Imaging Data Elements to Populate a Breast Cancer Screening Registry.

    Science.gov (United States)

    Lacson, Ronilda; Harris, Kimberly; Brawarsky, Phyllis; Tosteson, Tor D; Onega, Tracy; Tosteson, Anna N A; Kaye, Abby; Gonzalez, Irina; Birdwell, Robyn; Haas, Jennifer S

    2015-10-01

    Breast cancer screening is central to early breast cancer detection. Identifying and monitoring process measures for screening is a focus of the National Cancer Institute's Population-based Research Optimizing Screening through Personalized Regimens (PROSPR) initiative, which requires participating centers to report structured data across the cancer screening continuum. We evaluate the accuracy of automated information extraction of imaging findings from radiology reports, which are available as unstructured text. We present prevalence estimates of imaging findings for breast imaging received by women who obtained care in a primary care network participating in PROSPR (n = 139,953 radiology reports) and compared automatically extracted data elements to a "gold standard" based on manual review for a validation sample of 941 randomly selected radiology reports, including mammograms, digital breast tomosynthesis, ultrasound, and magnetic resonance imaging (MRI). The prevalence of imaging findings vary by data element and modality (e.g., suspicious calcification noted in 2.6% of screening mammograms, 12.1% of diagnostic mammograms, and 9.4% of tomosynthesis exams). In the validation sample, the accuracy of identifying imaging findings, including suspicious calcifications, masses, and architectural distortion (on mammogram and tomosynthesis); masses, cysts, non-mass enhancement, and enhancing foci (on MRI); and masses and cysts (on ultrasound), range from 0.8 to1.0 for recall, precision, and F-measure. Information extraction tools can be used for accurate documentation of imaging findings as structured data elements from text reports for a variety of breast imaging modalities. These data can be used to populate screening registries to help elucidate more effective breast cancer screening processes. PMID:25561069

  17. Cancer net survival on registry data: use of the new unbiased Pohar-Perme estimator and magnitude of the bias with the classical methods.

    Science.gov (United States)

    Roche, Laurent; Danieli, Coraline; Belot, Aurélien; Grosclaude, Pascale; Bouvier, Anne-Marie; Velten, Michel; Iwaz, Jean; Remontet, Laurent; Bossard, Nadine

    2013-05-15

    Net survival, the survival which might occur if cancer was the only cause of death, is a major epidemiological indicator required for international or temporal comparisons. Recent findings have shown that all classical methods used for routine estimation of net survival from cancer-registry data, sometimes called "relative-survival methods," provide biased estimates. Meanwhile, an unbiased estimator, the Pohar-Perme estimator (PPE), was recently proposed. Using real data, we investigated the magnitude of the errors made by four "relative-survival" methods (Ederer I, Hakulinen, Ederer II and a univariable regression model) vs. PPE as reference and examined the influence of time of follow-up, cancer prognosis, and age on the errors made. The data concerned seven cancer sites (2,51,316 cases) collected by FRANCIM cancer registries. Net survivals were estimated at 5, 10 and 15 years postdiagnosis. At 5 years, the errors were generally small. At 10 years, in good-prognosis cancers, the errors made in nonstandardized estimates with all classical methods were generally great (+2.7 to +9% points in prostate cancer) and increased in age-class estimations (vs. 5-year ones). At 15 years, in bad- or average-prognosis cancers, the errors were often substantial whatever the nature of the estimation. In good-prognosis cancers, the errors in nonstandardized estimates of all classical methods were great and sometimes very important. With all classical methods, great errors occurred in age-class estimates resulting in errors in age-standardized estimates (+0.4 to +3.2% points in breast cancer). In estimating net survival, cancer registries should abandon all classical methods and adopt the new Pohar-Perme estimator. PMID:22961565

  18. Validation of algorithms to detect distant metastases in men with prostate cancer using routine registry data in Denmark

    Directory of Open Access Journals (Sweden)

    Ehrenstein V

    2015-04-01

    Full Text Available Vera Ehrenstein,1 Rohini K Hernandez,2 Merete Lund Maegbaek,1 Johnny Kahlert,1 Mary Nguyen-Nielsen,1 Mette Nørgaard,1 Alexander Liede2 1Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; 2Center for Observational Research, Amgen, Thousand Oaks, CA, USA Objective: Among patients with prostate cancer, diagnostic codes for bone metastases in the Danish National Registry of Patients have a sensitivity of 44%. In an attempt to improve the sensitivity of registry-based identification of metastases from prostate cancer, we tested a series of algorithms, combining elevated prostate-specific antigen (PSA levels, use of antiresorptive therapy, and performed bone scintigraphy. Patients and methods: We randomly selected 212 men diagnosed with prostate cancer in 2005–2010 in the Central Denmark Region with prespecified PSA values, antiresorptive therapy, and bone scintigraphy who did not have a registry-based diagnostic code indicating presence of distant metastases. We defined three candidate algorithms for bone metastases: 1 PSA >50 µg/L and bone scintigraphy, 2 PSA >50 µg/L and antiresorptive therapy, and 3 PSA ≤50 µg/L with antiresorptive therapy or bone scintigraphy. An algorithm for distant metastasis site other than bone was defined as PSA >50 µg/L alone. Medical chart review was used as the reference standard to establish the presence or absence of metastases. Validity was expressed as a positive predictive value (PPV or a negative predictive value, based on whether the algorithms correctly classified metastases compared with the reference standard. Results: We identified 113 men with evidence of metastases according to the candidate algorithms, and 99 men without evidence of metastases according to the candidate algorithm. The PPVs of PSA >50 µg/L were 0.10 (95% confidence interval [CI] 0.04–0.19 for bone metastases and 0.14 (95% CI 0.07–0.24 for nonbone metastases, regardless of receipt of antiresorptive

  19. The Basic Facts of Korean Breast Cancer in 2012: Results from a Nationwide Survey and Breast Cancer Registry Database

    OpenAIRE

    Kim, Zisun; Min, Sun Young; Yoon, Chan Seok; Jung, Kyu-Won; Ko, Beom Seok; Kang, Eunyoung; Nam, Seok Jin; Lee, Seokwon; Hur, Min Hee; ,

    2015-01-01

    The Korean Breast Cancer Society has constructed a nationwide breast cancer database through utilization of an online registration program. We have reported the basic facts about breast cancer in Korea in 2012, and analyzed the changing patterns in the clinical characteristics and management of breast cancer in Korea over the last 10 years. Data on patients newly diagnosed with breast cancer were collected for the year 2012 from 97 hospitals and clinics nationwide using a questionnaire survey...

  20. Evaluation of an ICD-10 algorithm to detect osteonecrosis of the jaw among cancer patients in the Danish National Registry of Patients

    DEFF Research Database (Denmark)

    Ehrenstein, Vera; Gammelager, Henrik; Schiødt, Morten;

    2015-01-01

    PURPOSE: This study aimed to validate a predefined algorithm for osteonecrosis of the jaw (ONJ) among cancer patients in the Danish National Registry of Patients and to assess the nature of clinical information recorded in medical charts of ONJ patients. METHODS: We identified potential ONJ cases......%-81%]). CONCLUSIONS: The predefined algorithm is not adequate for monitoring ONJ in pharmacovigilance studies. Additional case-finding approaches, coupled with adjudication, are necessary to estimate ONJ incidence accurately....

  1. Mammographic density and breast cancer: a comparison of related and unrelated controls in the Breast Cancer Family Registry

    OpenAIRE

    Linton, Linda; Martin, Lisa J.; Li, Qing; Huszti, Ella; Minkin, Salomon; John, Esther M.; Rommens, Johanna; Paterson, Andrew D.; Boyd, Norman F

    2013-01-01

    Introduction Percent mammographic density (PMD) is a strong and highly heritable risk factor for breast cancer. Studies of the role of PMD in familial breast cancer may require controls, such as the sisters of cases, selected from the same 'risk set' as the cases. The use of sister controls would allow control for factors that have been shown to influence risk of breast cancer such as race/ethnicity, socioeconomic status and a family history of breast cancer, but may introduce 'overmatching' ...

  2. Incidence rate of ovarian cancer cases in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

    Directory of Open Access Journals (Sweden)

    Alghamdi IG

    2014-06-01

    Full Text Available Ibrahim G Alghamdi,1,2 Issam I Hussain,1 Mohamed S Alghamdi,3 Mansour M Alghamdi,4 Ahlam A Dohal,4 Mohammed A El-Sheemy51School of Life Sciences, University of Lincoln, Brayford Pool, Lincoln, UK; 2Al-Baha University, Kingdom of Saudia Arabia; 3Ministry of Health, General Directorate of Health Affairs, Al-Baha, Kingdom of Saudi Arabia; 4King Fahad Specialist Hospital–Dammam, Kingdom of Saudi Arabia; 5Department of Research and Development, Lincoln Hospital, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, UKPurpose: This study provides descriptive epidemiological data, such as the percentage of cases diagnosed, crude incidence rate (CIR, and age-standardized incidence rate (ASIR of ovarian cancer in Saudi Arabia from 2001–2008. Patients and methods: A retrospective descriptive epidemiological analysis of all ovarian cancer cases recorded in the Saudi Cancer Registry (SCR from January 2001–December 2008 was performed. The data were analyzed using descriptive statistics, analysis of variance tests, Poisson regression, and simple linear modeling.Results: A total of 991 ovarian cancer cases were recorded in the SCR from January 2001–December 2008. The region of Riyadh had the highest overall ASIR at 3.3 cases per 100,000 women, followed by the Jouf and Asir regions at 3.13 and 2.96 cases per 100,000 women. However, Hail and Jazan had the lowest rates at 1.4 and 0.6 cases per 100,000 women, respectively. Compared to Jazan, the incidence rate ratio for the number of ovarian cancer cases was significantly higher (P<0.001 in the Makkah region at 6.4 (95% confidence interval [CI]: 4.13–9.83, followed by Riyadh at 6.3 (95% CI: 4.10–9.82, and the eastern region of Saudi Arabia at 4.52 (95% CI: 2.93–6.98. The predicted annual CIR and ASIR for ovarian cancer in Saudi Arabia could be defined by the equations 0.9 + (0.07× years and 1.71 + (0.09× years, respectively.Conclusion: We observed a slight increase in the CIRs and

  3. The incidence rate of female breast cancer in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

    Directory of Open Access Journals (Sweden)

    Alghamdi IG

    2013-10-01

    Full Text Available Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, United Kingdom; 2Ministry of Health, General Directorate of Health Affairs Al-Baha, Kingdom of Saudi Arabia; 3Lincoln Hospital, Research and Development, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, United Kingdom Background: This study presents descriptive epidemiological data related to breast cancer cases diagnosed from 2001 to 2008 among Saudi women, including the frequency and percentage of cases, the crude incidence rate (CIR, and the age-standardized incidence rate (ASIR, adjusted by the region and year of diagnosis. Methods: This is a retrospective descriptive epidemiological study of all Saudi female breast cancer cases from 2001 to 2008. The statistical analyses were conducted using descriptive statistics, a linear regression model, and analysis of variance with the Statistical Package for the Social Sciences version 20 (IBM Corporation, Armonk, NY, USA. Results: A total of 6,922 female breast cancer cases were recorded in the Saudi Cancer Registry from 2001 to 2008. The highest overall percentages (38.6% and 31.2% of female breast cancer cases were documented in women who were 30–44 and 45–59 years of age, respectively. The eastern region of Saudi Arabia had the highest overall ASIR, at 26.6 per 100,000 women, followed by Riyadh at 20.5 and Makkah at 19.4. Jazan, Baha, and Asir had the lowest average ASIRs, at 4.8, 6.1, and 7.3 per 100,000 women, respectively. The region of Jouf (24.2%; CIR 11.2, ASIR 17.2 had the highest changes in CIR and ASIR from 2001 to 2008. While Qassim, Jazan and Tabuk recorded down-trending rates with negative values. Conclusion: There was a significant increase in the CIRs and ASIRs for female breast cancer between 2001 and 2008. The majority of breast cancer cases occurred among younger women. The region of Jouf had the greatest significant

  4. [Change in the occurrence of breast cancer in hospital registries (1980-2000)].

    Science.gov (United States)

    Belicza, Mladen; Lenicek, Tanja; Glasnović, Margareta; Elez, Martina; Gladić, Vedrana; Marton, Ingrid; Zuteković, Suncana; Jurlina, Hrvoje; Kusić, Zvonko; Cvrtila, Drago; Strnad, Marija; Tomas, Davor; Cupić, Hrvoje; Kruslin, Bozo

    2002-01-01

    The aim of our retrospective study was to analyze distribution of histological types, age of patients and hormonal dependency of breast cancer cases in the period 1980-2000 using computer database "Thanatos". This period was divided with regard to the war into a pre-war (1980-1990), war (1991-1995) and post-war period (1996-2000). We also paid attention to the Chernobyl accident (pre-Chernobyl from 1980-1986 and post-Chernobyl from 1987-2000). Special attention was focused on the period during the war mainly due to the fact that very little data exist in literature dealing with the war as a stress factor that may have induced and promoted carcinogenesis. During this twenty-one year period 2296 patients were diagnosed with breast cancer. In the female population of 2274, 2228 (98%) of these were ductal and only 46 (2%) were invasive lobular carcinomas. In all of the male cases (22) the cancer was pathohistologically verified as the invasive ductal type. The male:female ratio was 1:103. Comparing the pre-war and war periods we found a more than double increase in the male:female ratio (from 1:131 to 1:66). We observed similar results when we looked at the period after the Chernobyl incident where the ratio increased from 1:139 to 1:79. When we analyzed the distribution of histological types we found a significant increase in lobular carcinomas during the post-war period, from 1.1% to 5.5%; this increase was less significant for the post-Chernobyl period (1.0% to 3.3%). The average age of the patients with invasive ductal carcinomas increased from 56.7 yrs during the pre-war period to 59.7 yrs during the war and finally to 61.1 yrs during the post-war period. The average age of males with breast cancer decreased from 63.6 and 63.5 during the pre-war and war periods to 58.8 yrs during the post-war period. These results suggest that the war could have influenced the shift in the age of occurrence of breast cancer in both sexes appearing in younger males and in females

  5. Descriptive Epidemiology of Human Thyroid Cancer: Experience from a Regional Registry and the Volcanic Factor

    Directory of Open Access Journals (Sweden)

    Pasqualino eMalandrino

    2013-06-01

    Full Text Available Thyroid cancer (TC, the most common endocrine tumor, has steadily increased worldwide due to the increase of the papillary histotype. The reasons for this spread have not been established. In addition to more sensitive thyroid nodule screening, the effect of environmental factors cannot be excluded. Because high incidences of TC were found in volcanic areas (Hawaii and Iceland, a volcanic environment may play a role in the pathogenesis of TC.In January 2002, the Regional Register for Thyroid Cancer was instituted in Sicily. With a population of approximately 5 million inhabitants with similar genetic and lifestyle features, the coexistence in Sicily of rural, urban, industrial, moderate-to-low iodine intake and volcanic areas provides a conducive setting for assessing the environmental influences on the etiology of TC.In Sicily, between 2002 and 2004, 1,950 new cases of TC were identified, with an age-standardized rate (world ASR(w=17.8/100000 in females and 3.7/100000 in males and a high female/male ratio (4.3:1.0. The incidence of TC was heterogeneous within Sicily. There were 2.3 times more cases in the Catania province (where most of the inhabitants live in the volcanic area of Mt. Etna: ASR(w=31.7/105 in females and 6.4/105 in males vs 14.1 in females and 3.0 in males in the rest of Sicily. Multivariate analysis documented that residents in the volcanic area of Mt. Etna had a higher risk of TC, compared to the residents in urban, industrial and iodine deficient areas of Sicily. An abnormally high concentration of several chemicals was found in the drinking water of the Mt. Etna aquifer, which provides water to most of the residents in the Catania province. Our data suggest that environmental carcinogen(s of volcanic origin may promote papillary TC. Additional analyses, including cancer biological and molecular features, will allow a better understanding of risk factors and etiopathogenetic mechanisms.

  6. Oral malignant melanomas and other head and neck neoplasms in Danish dogs - data from the Danish Veterinary Cancer Registry

    Directory of Open Access Journals (Sweden)

    Kristensen Annemarie T

    2009-12-01

    Full Text Available Abstract Background Head and neck cancers (HNC are relatively common and often very serious diseases in both dogs and humans. Neoplasms originating in the head and neck region are a heterogeneous group. HNC often has an unfavourable prognosis and the proximity of the tissue structures renders extirpation of tumours with sufficient margins almost incompatible with preservation of functionality. In humans oral malignant melanoma (OMM is extremely rare, but represents a particular challenge since it is highly aggressive as is the canine counterpart, which thus may be of interest as a spontaneous animal model. Methods Canine cases entered in the Danish Veterinary Cancer Registry (DVCR from May 15th 2005 through February 29th 2008 were included in this study. Fisher's exact test was used to compare proportions of HNC in dogs and humans as well as proportions of surgically treated cases of OMM and squamous cell carcinomas (SCC. Also the proportions of benign and malignant neoplasms of different locations in dogs were compared using Fisher's exact test. Results A total of 1768 cases of neoplasias (679 malignant, 826 benign, 263 unknown were submitted. Of all neoplasias HNC accounted for 7.2% (n = 128. Of these, 64 (50% were malignant and 44 (34% benign. The most common types of malignant neoplasia were SCC (18; 28% of malignant, OMM (13; 20% of malignant, soft tissue sarcoma (11; 17% of malignant and adenocarcinoma (5; 11% of malignant. The most common types of benign neoplasms were adenoma (7; 16% of benign, polyps (6; 14% of benign and fibroma (5; 11% of benign. Conclusions In the current study, the proportion of neoplasia in the head and neck region in dogs in Denmark was similar to other canine studies and significantly more common than in humans with a large proportion of malignancies. Spontaneous HNC in dogs thus, may serve as a model for HNC in humans. Canine OMM is a spontaneous cancer in an outbred, immune-competent large mammal population and

  7. ABRAXAS (FAM175A) and Breast Cancer Susceptibility: No Evidence of Association in the Breast Cancer Family Registry

    OpenAIRE

    Anne-Laure Renault; Fabienne Lesueur; Yan Coulombe; Stéphane Gobeil; Penny Soucy; Yosr Hamdi; Sylvie Desjardins; Florence Le Calvez-Kelm; Maxime Vallée; Catherine Voegele; Hopper, John L.; Andrulis, Irene L.; Southey, Melissa C.; John, Esther M.; Jean-Yves Masson

    2016-01-01

    Approximately half of the familial aggregation of breast cancer remains unexplained. This proportion is less for early-onset disease where familial aggregation is greater, suggesting that other susceptibility genes remain to be discovered. The majority of known breast cancer susceptibility genes are involved in the DNA double-strand break repair pathway. ABRAXAS is involved in this pathway and mutations in this gene impair BRCA1 recruitment to DNA damage foci and increase cell sensitivity to ...

  8. Quality of Life and Mortality of Long-Term Colorectal Cancer Survivors in the Seattle Colorectal Cancer Family Registry

    OpenAIRE

    Adams, Scott V.; Rachel Ceballos; Newcomb, Polly A.

    2016-01-01

    Background and Aim Because most colorectal cancer patients survive beyond five years, understanding quality of life among these long-term survivors is essential to providing comprehensive survivor care. We sought to identify personal characteristics associated with reported quality of life in colorectal cancer survivors, and sub-groups of survivors potentially vulnerable to very low quality of life. Methods We assessed quality of life using the Veterans RAND 12-item Health Survey within a pop...

  9. The epidemiology of gastrointestinal stromal tumors in Taiwan, 1998–2008: a nation-wide cancer registry-based study

    International Nuclear Information System (INIS)

    To investigate the incidence of gastrointestinal stromal tumors (GISTs) in Taiwan and the impact of imatinib on the overall survival (OS) of GIST patients. GISTs were identified from the Taiwan Cancer Registry (TCR) from 1998 to 2008. The age-adjusted incidence rates and the observed OS rates were calculated. Cox proportional hazards models were applied to examine the mortality risk in three time periods (1998–2001, 2002–2004, 2005–2008) according to the application and availability of imatinib. From 1998 to 2008, 2,986 GISTs were diagnosed in Taiwan. The incidence increased from 1.13 per 100,000 in 1998 to 1.97 per 100,000 in 2008. The most common sites were stomach (47-59%), small intestine (31-38%), and colon/rectum (6-9%). The 5-year observed OS was 66.5% (60.3% for men, 74.2% for women, P < .0001). GISTs in the stomach had a better 5-year observed OS (69.4%) than those in the small intestine (65.1%) (P < .0001). The outcome of GIST improved significantly after the more widespread use of imatinib; the 5-year observed OS increased from 58.9% during 1998–2001 to 70.2% during 2005–2008 (P < .0001). Younger age, female sex, stomach location, and later diagnostic years were independent predictors of a better survival. The incidence of GIST has been increasing in Taiwan, partially due to the advancement of diagnostic technology/method and the increased awareness by physicians. The outcome of GIST has improved significantly with the availability and the wider use of imatinib

  10. Incidence of cancer in children residing in ten jurisdictions of the Mexican Republic: importance of the Cancer registry (a population-based study)

    International Nuclear Information System (INIS)

    causes of cancer in children. Due to the little that is known about the incidence of cancer in Mexican children, it will be necessary to develop a national program to establish a cancer registry for the whole of the country

  11. Are there disparities in the presentation, treatment and outcomes of patients diagnosed with medullary thyroid cancer?—An analysis of 634 patients from the California Cancer Registry

    Science.gov (United States)

    Cox, Christine; Chen, Yingjia; Cress, Rosemary; Semrad, Alison M.; Semrad, Thomas; Gosnell, Jessica E.

    2016-01-01

    Background Race, gender and socioeconomic disparities have been suggested to adversely influence stage at presentation, treatment options and outcomes in patients with cancer. Underserved minorities and those with a low socioeconomic status (SES) present with more advanced disease and have worse outcomes for differentiated thyroid cancer, but this relationship has never been evaluated for medullary thyroid cancer (MTC). Methods We used the California Cancer Registry (CCR) to evaluate disparities in the presentation, treatment and outcomes of patients diagnosed with MTC. Results We identified 634 patients with MTC diagnosed between 1988 and 2011. Almost everyone (85%) underwent thyroidectomy with 50% having a central lymph node dissection (CLND). There were no statistically significant differences by age, race or SES in mean tumor size or the proportion of patients diagnosed with localized disease, but men were diagnosed with larger tumors than women and were less likely to be diagnosed at a localized stage. Younger patients and women were more likely to be treated with a thyroidectomy. There were no statistically significant differences in surgical treatment by race or SES. Patients in the highest SES category had a better overall survival, but not disease specific survival, than those in the lowest SES (HR =0.3, CI =0.1–0.7). Patients treated with thyroidectomy had a better overall and cause specific survival, but the effect of CLND was not statistically significant after adjustment for other factors. Conclusions In MTC, we did not find that race, gender or SES influenced the presentation, treatment or outcomes of patients with MTC. Men with MTC present with larger tumors and are less likely to have localized disease. Half of the MTC patients in California do not undergo a CLND at the time of thyroidectomy, which may suggest a lack appropriate care across a range of healthcare systems. PMID:27563561

  12. Clinical Case Registries (CCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...

  13. Stroke Trials Registry

    Science.gov (United States)

    ... News About Neurology Image Library Search The Internet Stroke Center Trials Registry Clinical Trials Interventions Conditions Sponsors ... a clinical trial near you Welcome to the Stroke Trials Registry Our registry of clinical trials in ...

  14. Cancer Incidence in Golestan Province : Report of an Ongoing Population-based Cancer Registry in Iran between 2004 and 2008

    NARCIS (Netherlands)

    Roshandel, Gholamreza; Sadjadi, Alireza; Aarabi, Mohsen; Keshtkar, Abbasali; Sedaghat, Seyed Mehdi; Nouraie, Seyed Mehdi; Semnani, Shahryar; Malekzadeh, Reza

    2012-01-01

    Background: Golestan Province, at the western end of the Asian esophageal cancer (EC) belt in northeastern Iran, was reported to have one of the highest worldwide rates of EC in the 1970s. We have previously shown a declining incidence of EC in Golestan during the last decades. This study reports ad

  15. The spatial distribution of cancer incidence in fars province: A GIS-Based analysis of cancer registry data

    Directory of Open Access Journals (Sweden)

    Ali Goli

    2013-01-01

    Conclusions: Analysis of the spatial distribution of cancer shows significant differences from year to year and between different areas. However, a clear spatial autocorrelation is observed, which can be of great interest and importance to researchers for future epidemiological studies, and to policymakers for applying preventive measures.

  16. Measuring the effect of improvement in methodological techniques on data collection in the Gharbiah population-based cancer registry in Egypt: Implications for other Low- and Middle-Income Countries.

    Science.gov (United States)

    Smith, Brittney L; Ramadan, Mohamed; Corley, Brittany; Hablas, Ahmed; Seifeldein, Ibrahim A; Soliman, Amr S

    2015-12-01

    The purpose of this study was to describe and quantify procedures and methods that maximized the efficiency of the Gharbiah Cancer Registry (GPCR), the only population-based cancer registry in Egypt. The procedures and measures included a locally-developed software program to translate names from Arabic to English, a new national ID number for demographic and occupational information, and linkage of cancer cases to new electronic mortality records of the Ministry of Health. Data was compiled from the 34,058 cases from the registry for the years 1999-2007. Cases and registry variables about demographic and clinical information were reviewed by year to assess trends associated with each new method or procedure during the study period. The introduction of the name translation software in conjunction with other demographic variables increased the identification of detected duplicates from 23.4% to 78.1%. Use of the national ID increased the proportion of cases with occupation information from 27% to 89%. Records with complete mortality information increased from 18% to 43%. Proportion of cases that came from death certificate only, decreased from 9.8% to 4.7%. Overall, the study revealed that introducing and utilizing local and culture-specific methodological changes, software, and electronic non-cancer databases had a significant impact on data quality and completeness. This study may have translational implications for improving the quality of cancer registries in LMICs considering the emerging advances in electronic databases and utilization of health software and computerization of data. PMID:26590335

  17. Measuring the effect of improvement in methodological techniques on data collection in the Gharbiah population-based cancer registry in Egypt: Implications for other Low- and Middle-Income Countries.

    Science.gov (United States)

    Smith, Brittney L; Ramadan, Mohamed; Corley, Brittany; Hablas, Ahmed; Seifeldein, Ibrahim A; Soliman, Amr S

    2015-12-01

    The purpose of this study was to describe and quantify procedures and methods that maximized the efficiency of the Gharbiah Cancer Registry (GPCR), the only population-based cancer registry in Egypt. The procedures and measures included a locally-developed software program to translate names from Arabic to English, a new national ID number for demographic and occupational information, and linkage of cancer cases to new electronic mortality records of the Ministry of Health. Data was compiled from the 34,058 cases from the registry for the years 1999-2007. Cases and registry variables about demographic and clinical information were reviewed by year to assess trends associated with each new method or procedure during the study period. The introduction of the name translation software in conjunction with other demographic variables increased the identification of detected duplicates from 23.4% to 78.1%. Use of the national ID increased the proportion of cases with occupation information from 27% to 89%. Records with complete mortality information increased from 18% to 43%. Proportion of cases that came from death certificate only, decreased from 9.8% to 4.7%. Overall, the study revealed that introducing and utilizing local and culture-specific methodological changes, software, and electronic non-cancer databases had a significant impact on data quality and completeness. This study may have translational implications for improving the quality of cancer registries in LMICs considering the emerging advances in electronic databases and utilization of health software and computerization of data.

  18. Survival improvements associated with access to biological agents: Results from the South Australian (SA) metastatic colorectal cancer (mCRC) registry.

    Science.gov (United States)

    Tomita, Yoko; Karapetis, Christos S; Ullah, Shahid; Townsend, Amanda R; Roder, David; Beeke, Carol; Roy, Amitesh C; Padbury, Rob; Price, Timothy J

    2016-01-01

    Background Randomized controlled trials evaluating biological therapy have shown improvements in survival from metastatic colorectal cancer (mCRC). Subjects in the trials represent a selected proportion of mCRC patients. We have the potential to assess the impact of biological therapy on mCRC outcomes, particularly the effect of bevacizumab, from a population-based clinical registry by comparing two time cohorts with differences in therapy accessibility. Material and methods A retrospective cohort study was performed by analyzing the South Australian (SA) mCRC registry data based on diagnosis in two time periods: 1 February 2006-31 May 2009 (Cohort A) versus 1 June 2009-30 June 2014 (Cohort B). The demarcation for these cohorts was chosen to reflect the change in accessibility of bevacizumab from July 2009. Results Between February 2006 and June 2014, 3308 patients were identified through the SA mCRC registry: 1464 (44%) in Cohort A and 1844 (56%) in Cohort B. 61 and 59% patients in Cohort A and B, respectively received systemic therapy (p = 0.26). Major differences in clinical characteristics were: biological therapy use 18 versus 33% (p rise in bevacizumab administration was observed in Cohort B. Its use in first-line therapy remained relatively low even after the reimbursement, potentially reflecting real world practice where comorbidities, primary in-situ and age may contraindicate its use. mOS improvement over time was attributed to increased access to biological therapy, especially bevacizumab and possibly advance in peri-operative and supportive care. PMID:26878155

  19. 江西省肿瘤登记地区女性恶性肿瘤发病状况分析%An Analysis of Female Cancer Incidence in Cancer Registries in Jiangxi Province

    Institute of Scientific and Technical Information of China (English)

    刘杰; 朱丽萍; 杨旭丽; 李艾; 吉路; 赵军

    2013-01-01

    [Purpose] To investigate female cancer epidemic status in cancer registries in Jiangxi province, and to provide reference for local cancer control and prevention. [Methods]The cancer data from 2009 to 2011 in cancer registries of Jiangxi province were analyzed. The cancer incidence, standardized incidence rate and cumulative rate were analyzed. [ Results ]The female crude cancer incidence in cancer registries of Jiangxi province was 141.04/105,the age-standardized incidence by Chinese population was 86.64/105,and age-standardized incidence by World population was 111.23/105,cumulative incidence rate (0~74 years) was 12.40%. The female cancer incidence in urban areas was higher than that in rural areas . The top 5 common cancers in urban was breast cancer,lung cancer,colon & rectum cancer,stomach cancer and cervix cancer. Lung cancer was the leading cause of cancer incidence in female in rural areas,followed by stomach cancer, breast cancer,liver cancer and colon cancer. [Conclusion] Cancer prevention and control in female in Jiangxi province should put emphasis on breast cancer,lung cancer,digestive system cancer and cervix cancer.%[目的]了解江西省肿瘤登记地区女性居民恶性肿瘤报告发病情况,为女性居民恶性肿瘤防控策略提供参考.[方法]对江西省肿瘤登记地区2009~2011年女性恶性肿瘤发病数据进行分析,计算女性主要肿瘤的发病率、标化率、顺位、累积率和截缩率等指标.[结果]江西省肿瘤登记地区女性居民恶性肿瘤粗发病率为141.04/10万,中标率为86.64/10万,世标率为111.23/10万,0~74岁累积发病率为12.40%.城市女性恶性肿瘤发病率高于农村.乳腺癌是城市女性居民恶性肿瘤发病首位原因,其次为肺癌、结直肠癌、胃癌和宫颈癌.肺癌位居农村地区女性居民发病首位,其次为胃癌、乳腺癌、肝癌和结直肠癌.[结论]乳腺癌、肺癌、消化系统恶性肿瘤及宫颈癌应成为江西省女性居民恶性肿瘤防控的重点.

  20. Adherence to the World Cancer Research Fund/American Institute for Cancer Research lifestyle recommendations in colorectal cancer survivors : Results of the PROFILES registry

    NARCIS (Netherlands)

    Winkels, Renate M; van Lee, Linde; Beijer, Sandra; Bours, Martijn J; van Duijnhoven, Fränzel J B; Geelen, Anouk; Hoedjes, Meeke; Mols, F.; de Vries, Jeanne; Weijenberg, Matty P; Kampman, Ellen

    2016-01-01

    We examined adherence to the eight The World Cancer Research Foundation/American Institute for Cancer Research (WCRF/AICR) recommendations on diet, physical activity, and body weight among colorectal cancer survivors, and whether adherence was associated with intention to eat healthy and with the ne

  1. Neoadjuvant Radiation Is Associated With Improved Survival in Patients With Resectable Pancreatic Cancer: An Analysis of Data From the Surveillance, Epidemiology, and End Results (SEER) Registry

    International Nuclear Information System (INIS)

    Purpose: Cancer of the exocrine pancreas is the fifth leading cause of cancer death in the United States. Neoadjuvant chemoradiation has been investigated in several trials as a strategy for downstaging locally advanced disease to resectability. The aim of the present study is to examine the effect of neoadjuvant radiation therapy (RT) vs. other treatments on long-term survival for patients with resectable pancreatic cancer in a large population-based sample group. Methods and Materials: The Surveillance, Epidemiology, and End Results (SEER) registry database (1994-2003) was queried for cases of surgically resected pancreatic cancer. Retrospective analysis was performed. The endpoint of the study was overall survival. Results: Using Kaplan-Meier analysis we found that the median overall survival of patients receiving neoadjuvant RT was 23 months vs. 12 months with no RT and 17 months with adjuvant RT. Using Cox regression and controlling for independent covariates (age, sex, stage, grade, and year of diagnosis), we found that neoadjuvant RT results in significantly higher rates of survival than other treatments (hazard ratio [HR], 0.55; 95% confidence interval, 0.38-0.79; p = 0.001). Specifically comparing adjuvant with neoadjuvant RT, we found a significantly lower HR for death in patients receiving neoadjuvant RT rather than adjuvant RT (HR, 0.63; 95% confidence interval, 0.45-0.90; p = 0.03). Conclusions: This analysis of SEER data showed a survival benefit for the use of neoadjuvant RT over surgery alone or surgery with adjuvant RT in treating pancreatic cancer. Therapeutic strategies that use neoadjuvant RT should be further explored for patients with resectable pancreatic cancer

  2. Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: The electronic Patient-reported Outcomes from Cancer Survivors (ePOCS system

    Directory of Open Access Journals (Sweden)

    Velikova Galina

    2011-10-01

    Full Text Available Abstract Background Cancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service. Methods/Design Non-metastatic breast, colorectal and prostate cancer patients (largest survivor groups, within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore

  3. Migrant breast cancer patients and their participation in genetic counseling: results from a registry-based study

    OpenAIRE

    Baars, J. E.; van Dulmen, A M; Velthuizen, M. E.; Theunissen, E. B. M.; Vrouenraets, B.C.; Kimmings, A.N.; Dalen, T. van; van Ooijen, B; Witkamp, A.J.; van der Aa, M. A.; Ausems, M.G.E.M.

    2016-01-01

    Certain ethnic groups seem to have less access to cancer genetic counseling. Our study was to investigate the participation in cancer genetic counseling among migrant breast cancer patients of Turkish and Moroccan origin. Hospital medical records of Turkish and Moroccan and of a comparative group of non-Turkish/Moroccan newly diagnosed breast cancer patients were studied. All women were diagnosed between 2007 and 2012. Eligibility for genetic counseling was assessed with a checklist. A total ...

  4. Migrant breast cancer patients and their participation in genetic counseling : results from a registry-based study

    OpenAIRE

    Baars, J. E.; van Dulmen, A M; Velthuizen, M. E.; Theunissen, E. B. M.; Vrouenraets, B.C.; Kimmings, A.N.; Dalen, T. van; van Ooijen, B; Witkamp, A.J.; van der Aa, M. A.; Ausems, M.G.E.M.

    2016-01-01

    Certain ethnic groups seem to have less access to cancer genetic counseling. Our study was to investigate the participation in cancer genetic counseling among migrant breast cancer patients of Turkish and Moroccan origin. Hospital medical records of Turkish and Moroccan and of a comparative group of non-Turkish/Moroccan newly diagnosed breast cancer patients were studied. All women were diagnosed between 2007 and 2012. Eligibility for genetic counseling was assessed with a checklist. A total ...

  5. The Italian registry of soft tissue tumors.

    Science.gov (United States)

    Clemente, C; Orazi, A; Rilke, F

    1988-01-01

    After a review of the incidence data on malignant soft-tissue tumors in Italy (Registro dei Tumori della Regione Lombardia, provincia di Varese), Europe (nine European Cancer Registries considered representative of various geographical areas) and extra-European countries (data of ten World Cancer Registries), the aim and the organization of the Italian Malignant Soft-Tissue Tumor Registry are described. The collection system is based on dedicated forms prepared for the computerization of all data. From 1.1.1985 to 31.3.1987, 207 cases of malignant and potentially malignant soft-tissue tumors entered the Registry, with exclusion of those sarcomas arising in viscera. The distribution, categorized by histologic type, sex and site, and the preliminary results on relapses and metastases are reported.

  6. The Virtual Observatory Registry

    CERN Document Server

    Demleitner, Markus; Sidaner, Pierre Le; Plante, Raymond L

    2014-01-01

    In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources -- typically, data and services -- that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention comm...

  7. Medication use among women with breast cancer in the Netherlands : Pharmacoepidemiological studies based on data from the Eindhoven Cancer Registry-PHARMO linkage

    NARCIS (Netherlands)

    M.P.P. van Herk-Sukel (Myrthe)

    2011-01-01

    textabstractIn the Netherlands, breast cancer is the most frequent (30%) of all cancers in women. In 2008, around 13,000 women were newly diagnosed with the disease. Worldwide, breast cancer accounted for almost 1.4 million new cancer patients in 20082. Incidence rates of breast cancer have been inc

  8. Facility Registry Service (FRS)

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Facility Registry Service (FRS) provides an integrated source of comprehensive (air, water, and waste) environmental information about facilities across EPA,...

  9. The role of depression in the development of breast cancer: analysis of registry data from a single institute.

    Science.gov (United States)

    Montazeri, Ali; Jarvandi, Soghra; Ebrahimi, Mandana; Haghighat, Shahpar; Ansari, Mariam

    2004-01-01

    Although controversial, the belief that developing breast cancer may be associated with psychological distress is not uncommon. The present study examined the role of psychological variables in the development of breast cancer in women attending a breast clinic for medical examination in Tehran, Iran. During a three-year period (1997-1999) a trained female nurse interviewed all women attending the Iranian Center for Breast Cancer (ICBC) before a confirmed diagnosis was made (N = 3000). Data were collected on demographic variables (age, education and marital status), known risk factors (age at menarche, age at first time full term pregnancy, family history of breast cancer, menopausal status, and oral contraceptive use), psychological variables, including history of psychiatric medications, depression (depressed mood, hopelessness, and loss of interests and pleasures), anxiety (mental and somatic signs) and two single measures of overall health and quality of life. In all, 243 patients were diagnosed as having breast cancer. A total of 486 patients with benign disease were randomly selected from the original cohort as controls. Univariate and multivariate logistic regression analyses were performed to determine the predictive effect of each factor on the risk of breast cancer. There were no significant differences between cases and controls except for age at menarche (P = 0.007) and family history of breast cancer (P<0.001). With regard to psychological variables studied, the results showed that there were significant differences between cases and controls regarding depression (depressed mood P<0.0001, hopelessness P = 0.001, and loss of interest and pleasures P = 0.001), and anxiety (mental signs P = 0.006). Finally, after performing multiple logistic regression analysis in addition to family history and age at menarche, depressed mood and hopelessness showed significant results (odds ratios of 1.90, and 1.63 respectively). The findings of the present study suggest

  10. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

    Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J;

    2016-01-01

    BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completen......BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database...

  11. [Reliability of cancer as the underlying cause of death according to the Mortality Information System and Population-Based Cancer Registry in Goiânia, Goiás State, Brazil].

    Science.gov (United States)

    Oliveira, Patricia Pereira Vasconcelos de; Silva, Gulnar Azevedo e; Curado, Maria Paula; Malta, Deborah Carvalho; Moura, Lenildo de

    2014-02-01

    This study assessed the reliability of cancer as the underlying cause of death using probabilistic linkage between the Mortality Information System and Population-Based Cancer Registry (PBCR) in Goiânia, Goiás State, Brazil, from 2000 to 2005. RecLink III was used for probabilistic linkage, and reliability was assessed by Cohen's kappa and prevalence-adjusted and bias-adjusted kappa (PABAK). In the probabilistic linkage, 2,874 individuals were identified for the reliability analysis. Cohen's kappa ranged from 0.336 to 0.846 and PABAK from 0.810 to 0.990 for 14 neoplasm groups defined in the study. For reliability of the 35 leading cancers, 12(34.3%) presented kappa values under 0.600 and PABAK over 0.981. Among the neoplasms common to both sexes, crude agreement ranged from 0.672 to 0.790 and adjusted agreement from 0.894 to 0.961. Sixty-seven percent of cases classified by the Mortality Information System as "cancer of ill-defined sites" were reclassified according to the PBCR. This study was useful for the classification of cancer mortality estimates in areas covered by the PBCR.

  12. Stereotactic body radiotherapy for centrally located early-stage non-small cell lung cancer or lung metastases from the RSSearch® patient registry

    International Nuclear Information System (INIS)

    The purpose of this study was to evaluate treatment patterns and outcomes of stereotactic body radiotherapy (SBRT) for centrally located primary non-small cell lung cancer (NSCLC) or lung metastases from the RSSearch® Patient Registry, an international, multi-center patient registry dedicated to radiosurgery and SBRT. Eligible patients included those with centrally located lung tumors clinically staged T1-T2 N0, M0, biopsy-confirmed NSCLC or lung metastases treated with SBRT between November 2004 and January 2014. Descriptive analysis was used to report patient demographics and treatment patterns. Overall survival (OS) and local control (LC) were determined using Kaplan-Meier method. Toxicity was reported using the Common Terminology Criteria for Adverse Events version 3.0. In total, 111 patients with 114 centrally located lung tumors (48 T1-T2,N0,M0 NSCLC and 66 lung metastases) were treated with SBRT at 19 academic and community-based radiotherapy centers in the US and Germany. Median follow-up was 17 months (range, 1–72). Median age was 74 years for primary NSCLC patients and 65 years for lung metastases patients (p < 0.001). SBRT dose varied from 16 – 60 Gy (median 48 Gy) delivered in 1–5 fractions (median 4 fractions). Median dose to centrally located primary NSCLC was 48 Gy compared to 37.5 Gy for lung metastases (p = 0.0001) and median BED10 was 105.6 Gy for primary NSCLC and 93.6 Gy for lung metastases (p = 0.0005). Two-year OS for T1N0M0 and T2N0M0 NSCLC was 79 and 32.1 %, respectively (p = 0.009) and 2-year OS for lung metastases was 49.6 %. Two-year LC was 76.4 and 69.8 % for primary NSCLC and lung metastases, respectively. Toxicity was low with no Grade 3 or higher acute or late toxicities. Overall, patients with centrally located primary NSCLC were older and received higher doses of SBRT than those with lung metastases. Despite these differences, LC and OS was favorable for patients with central lung tumors treated with SBRT. Reported toxicity

  13. 中国城乡11市县常见恶性肿瘤发病趋势分析%Study on cancer incidence through the Cancer Registry Program in 11 Cities and Counties, China

    Institute of Scientific and Technical Information of China (English)

    雷涛; 毛伟敏; 杨红健; 陈晓钟; 雷通海; 汪祥辉; 应倩; 陈万青; 张思维

    2009-01-01

    目的 探讨中国恶性肿瘤发病特点及时间趋势.方法 采用中国城乡11个市县肿瘤登记处的1988-2002年资料进行统计与分析,描述恶性肿瘤发病现状,研究其时间趋势与发病特点.结果 11个市县肿瘤登记处覆盖地区15年内新发恶性肿瘤695 050例,粗发病率为215.50/10万,世界标准人口调整发病率为170.97/10万.主要恶性肿瘤发病率排序依次为肺癌、胃癌、肝癌、食管癌、乳腺癌、结肠癌、直肠癌、胰腺癌、膀胱癌、白血病.16种主要恶性肿瘤占全部的85.56%.1988-2002年恶性肿瘤合并的粗发病率呈较快上升趋势.按部位分析,增幅最大的是前列腺癌(185.48%),其次为胆囊癌、乳腺癌、结肠癌等.发病率下降幅度最大的是宫颈癌(17.00%),其次为食管癌、胃癌、鼻咽癌.结论 中国11个市县1988-2002年恶性肿瘤总的粗发病率呈上升趋势,调整年龄因素后变化不明显.胰腺癌、膀胱癌、白血病已进入前10位,成为常见恶性肿瘤.前列腺癌和胆囊癌发病率虽然较低,但是增长幅度最大.%Objective Aim of this paper was to explore the trend and characteristics of cancer incidence in 11 areas (5 cities and 6 counties) in China. Methods Data from cancer registries during 1988 to 2002 collected from the 11 cancer registry points were used to analyze the trends and characteristics of cancer incidence rates. Results There were 695 050 newly developed cancer cases in this study. The crude rate of incidence and the world age-adjusted incidence were 215.50/10~5 and 170.97/10~5 respectively. The leading cancer sites were lung, stomach, liver, esophagus, breast, colon, rectum, pancreas, bladder and leukemia. The sixteen key cancers accounted for 85.56% of all the cancer cases. The crude incidence rate of all cancers had been significantly increased from 1988 to 2002. Among them, prostate (185.48%) ranked the fastest growing one followed by cancers of the gallbladder, breast, colon

  14. Report of Incidence and Mortality from China Cancer Registries in 2008%中国肿瘤登记地区2008年恶性肿瘤发病和死亡分析

    Institute of Scientific and Technical Information of China (English)

    郑荣寿; 张思维; 吴良有; 李光琳; 赵平; 赫捷; 陈万青

    2012-01-01

    [Purpose] To investigate the cancer incidence and mortality in cancer registration areas in 2008. [ Methods ] After checking and evaluating the cancer registry data in 2008 from 56 cancer registries, of them 41 registries' data were selected for this analysis. We classified cancer registries into two categories: urban and rural. Incidence and mortality rates,age-specific rates,age-standardized rates,proportions,cumulative rates were calculated. [Results] The population coverage of all 41 registries were 66 138 784 (52 158 495 in urban areas and 13 980 289 in rural areas). The total cancer incident cases and deaths were 197 833 and 122 136,respectively with mortality to incidence rate ratio of 0.62. The morphological verified rate was 69.33% and 2.23% of cases were identified by death certificate only. The crude cancer incidence in registration areas was 299.12/105(330.16/105 in male and 267.56/105 in female) and age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) were 148.75/105 and 194.99/105,respectively with cumulative incidence rate (0~74 age years old) of 22.27%. Both of crude and adjusted incidence rates in urban areas were higher than that in rural areas. The crude cancer mortality was 184.67/105 (228.14/105 in male, 140.48/105 in female),and age-standardized mortality rates by Chinese standard population (ASMRC) and by world population were 84.36/105 and 114.32/105 respectively with cumulative mortality rate (0~74 age years old) of 12.89%. Age-adjusted mortality rates in urban areas were lower than that in rural areas. The top ten commonest cancer types were lung, stomach, colorectum, liver, esophagus , pancreas, brain, lymphoma, breast and cervix, accounting for 75% of all cancer incidence in registration areas. Lung cancer was the leading cause of cancer death,followed by gastric cancer,liver cancer, esophageal cancer,colorectum cancer and pancreas cancer. The mortality of top ten cancers

  15. 1996-1999 Cancer Registry,Oncology Unit, Hospital Universitario Ramón González Valencia,

    Directory of Open Access Journals (Sweden)

    Andrés Mantilla Reinaud

    2006-04-01

    Full Text Available Malignant tumors are one of the first causes of mortality in Colombia.We like to establish frequency, distribution by gender andage, histology and clinical stage of malignant tumors from Unidadde Oncología del Hospital Univesitario Ramón González Valenciaduring 1996-1999. We only included subjects more than 11 years oldwith histopahological diagnosis confirmed. Data were obtained fromclinical charts. We obtained 2.011 cancer records; female were morefrequent affected (63,5%. The most frequently cancer was: cervix(17,0%, skin (14, 4%, female breast (12,2%, stomach (8,2%, lung(4,4%, prostate (2,7%, thyroid (2,4%, ovary and annexes (2,3%,rectum (2,3%, and esophagus (2,0%. The histopathologycal typeswere: Squamous cell carcinoma in cervix uteri (85.2 %, basocelularcarcinoma in skin (67,0%, invasive intraductal in female breast(78,0%, intestinal adenocarcinoma in stomach (32,1%, adenocarcinomain lung (21,3%, adenocarcinoma in prostate (76,4%, papilarcarcinoma in thyroid (43,0%, serous papilar cystadenocarcinoma inovary and annexes (10,6%, adenocarcinoma in colon and rectum(57,4%, and squamous cell carcinoma in esophagus (24,4%. Thefirst four diseases entities were preventable, reflected our need toimprove education in health promotion and prevention. We hope thatthis study will be the basis for future cancer’s risk factors studies.

  16. Incidence Patterns and Trends of non-Central Nervous System Solid Tumours in Children and Adolescents. A Collaborative Study of the Spanish Population Based Cancer Registries

    Science.gov (United States)

    Larrañaga, Nerea; Sanchez, Mª José; Ardanaz, Eva; Felipe, Saray; Marcos-Gragera, Rafael; Ramos, María; Carulla, Marià; Chirlaque, Mª Dolores; Argüelles, Marcial V.; Martos, Carmen; Mateo, Antonio; Peris-Bonet, Rafael

    2016-01-01

    Objective: To describe incidence patterns and trends in children (0-14 years) and adolescents (15-19 age-range) with solid tumours, except those of central nervous system (CNS), in Spain. Methods: Cases were drawn from eleven Spanish population-based cancer registries. Incidence was estimated for the period 1983-2007 and trends were evaluated using Joinpoint regression analysis. Results: The studied tumour groups accounted for 36% of total childhood cancers and 47.6% of those diagnosed in adolescence with annual rates per million of 53.5 and 89.3 respectively. In children 0 to 14 years of age, Neuroblastoma (NB) was the commonest (7.8%) followed by Soft-tissue sarcomas (STS) (6.3%), bone tumours (BT) (6.2%) and renal tumours (RT) (4.5%). NB was the most frequently diagnosed tumour before the 5th birthday, while STS and BT were the commonest at 5-9 years of age, and BT and Carcinoma and other epithelial tumours (COET) at 10-14. COET presented the highest incidence in adolescents, followed by germ-cell tumours (GCT), BT and STS. These four diagnostic groups accounted for 94% of total non-CNS solid tumours, in adolescents. Overall incidence rates increased significantly in children up to 1996 with an annual percentage change (APC) of 2.6% (95%CI: 1.7; 3.6). NB and COET showed significant time trend (APCs: 1.4% and 3.8% respectively) while other tumour groups such as RT, STS, BT or GCT had no significant changes over time. A significant increase was present in NB under the age of 5 and in BT and STS in children aged 10-14 years. In adolescents there were significant increases for all tumours combined (APC=2.7; 95%CI: 1.8-3.6) and for STS, GCT and COET (APCs: 3.2%, 4.4% and 3.5% respectively), while other tumour groups such as hepatic tumours, BT or thyroid carcinomas showed a decreasing trend or no increase. Conclusions: Overall, the incidence of the studied cancers in children increased along the period 1983-1996 with no posterior significant rise, while the incidence

  17. The Norwegian Twin Registry.

    Science.gov (United States)

    Nilsen, Thomas S; Brandt, Ingunn; Magnus, Per; Harris, Jennifer R

    2012-12-01

    Norway has a long-standing tradition in twin research, but the data collected in several population-based twin studies were not coordinated centrally or easily accessible to the scientific community. In 2009, the Norwegian Twin Registry was established at the Norwegian Institute of Public Health (NIPH) in Oslo with the purpose of creating a single research resource for Norwegian twin data. As of today, the Norwegian Twin Registry contains 47,989 twins covering birth years 1895-1960 and 1967-1979; 31,440 of these twins consented to participate in health-related research. In addition, DNA from approximately 4,800 of the twins is banked at the NIPH biobank and new studies are continually adding new data to the registry. The value of the Norwegian twin data is greatly enhanced by the linkage opportunities offered by Norway's many nationwide registries, spanning a broad array of medical, demographic, and socioeconomic information.

  18. Data Element Registry Services

    Data.gov (United States)

    U.S. Environmental Protection Agency — Data Element Registry Services (DERS) is a resource for information about value lists (aka code sets / pick lists), data dictionaries, data elements, and EPA data...

  19. Germline mutations in PMS2 and MLH1 in individuals with solitary loss of PMS2 expression in colorectal carcinomas from the Colon Cancer Family Registry Cohort

    Science.gov (United States)

    Rosty, Christophe; Clendenning, Mark; Walsh, Michael D; Eriksen, Stine V; Southey, Melissa C; Winship, Ingrid M; Macrae, Finlay A; Boussioutas, Alex; Parry, Susan; Arnold, Julie; Young, Joanne P; Casey, Graham; Haile, Robert W; Gallinger, Steven; Le Marchand, Loïc; Newcomb, Polly A; Potter, John D; DeRycke, Melissa; Lindor, Noralane M; Thibodeau, Stephen N; Baron, John A; Win, Aung Ko; Hopper, John L; Jenkins, Mark A; Buchanan, Daniel D

    2016-01-01

    Objectives Immunohistochemistry for DNA mismatch repair proteins is used to screen for Lynch syndrome in individuals with colorectal carcinoma (CRC). Although solitary loss of PMS2 expression is indicative of carrying a germline mutation in PMS2, previous studies reported MLH1 mutation in some cases. We determined the prevalence of MLH1 germline mutations in a large cohort of individuals with a CRC demonstrating solitary loss of PMS2 expression. Design This cohort study included 88 individuals affected with a PMS2-deficient CRC from the Colon Cancer Family Registry Cohort. Germline PMS2 mutation analysis (long-range PCR and multiplex ligation-dependent probe amplification) was followed by MLH1 mutation testing (Sanger sequencing and multiplex ligation-dependent probe amplification). Results Of the 66 individuals with complete mutation screening, we identified a pathogenic PMS2 mutation in 49 (74%), a pathogenic MLH1 mutation in 8 (12%) and a MLH1 variant of uncertain clinical significance predicted to be damaging by in silico analysis in 3 (4%); 6 (9%) carried variants likely to have no clinical significance. Missense point mutations accounted for most alterations (83%; 9/11) in MLH1. The MLH1 c.113A> G p.Asn38Ser mutation was found in 2 related individuals. One individual who carried the MLH1 intronic mutation c.677+3A>G p.Gln197Argfs*8 leading to the skipping of exon 8, developed 2 tumours, both of which retained MLH1 expression. Conclusions A substantial proportion of CRCs with solitary loss of PMS2 expression are associated with a deleterious MLH1 germline mutation supporting the screening for MLH1 in individuals with tumours of this immunophenotype, when no PMS2 mutation has been identified. PMID:26895986

  20. Trauma registry reengineered.

    Science.gov (United States)

    Wargo, Christina; Bolig, Nicole; Hixson, Heather; McWilliams, Nate; Rummerfield, Heather; Stratton, Elaine; Woodruff, Tracy

    2014-01-01

    A successful trauma registry balances accuracy of abstraction and timeliness of case submissions to achieve quality performance. Staffing to achieve quality performance is a challenge at times based on competitive institutional need. The aim of this performance improvement timing study was to identify trauma registry job responsibilities and redesign the responsibilities to create increased abstraction time and maintain accuracy of data abstraction. The outcome is measured by case submission rates with existing staffing and interrater reliability outcomes. PMID:25397337

  1. 中国肿瘤登记地区2007年肿瘤发病和死亡分析%A Report of Cancer Incidence and Mortality from 38 Cancer Registries in China,2007

    Institute of Scientific and Technical Information of China (English)

    陈万青; 张思维; 郑荣寿; 雷正龙; 李光琳; 邹小农; 赵平

    2011-01-01

    [目的]对全国肿瘤登记中心收集的2007年肿瘤的发病和死亡数据进行汇总,描述和分析中国肿瘤登记覆盖地区肿瘤负担情况.[方法]2010年,上报2007年肿瘤登记资料的登记处共48个,其中数据符合标准的登记处有38个.38个登记处覆盖人口59809313人(其中城市44609139人,农村15200174人),共报告新发病例165171例,死亡病例105916例.病理诊断比例为65.83%,只有死亡证明书比例为1.95%,死亡/发病比为0.64.分别计算38个登记地区发病率、死亡率,地区别、性别、年龄别发病死亡率,年龄调整率,疾病构成比和累积率,以反映登记地区恶性肿瘤的负担情况及其特征.[结果]38个中国肿瘤登记地区恶性肿瘤发病率为276.16/10万(其中男性305.22/10万,女性246.46/10万;城市地区为284.71/10万,农村地区为251.07/10万),中标率145.39/10万,世标率189.46/10万,0~74岁累积发病率为21.68%.恶性肿瘤死亡率为177.09/10万(其中男性219.15/10万,女性134.10/10万;城市地区为173.55/10万,农村地区为187.49/10万),中标率86.06/10万,世标率116.46/10万,0~74岁累积死亡率为13.06%.常见肿瘤发病前10位是肺癌、胃癌、结直肠癌、肝癌、女性乳腺癌、食管癌、胰腺癌、膀胱癌、脑瘤和淋巴瘤,占全部恶性肿瘤发病的76.12%.死亡前10位的肿瘤是肺癌、肝癌、胃癌、食管癌、结直肠癌、胰腺癌、乳腺癌、白血病、脑瘤和淋巴瘤,占全部恶性肿瘤死亡的84.37%.[结论]恶性肿瘤依然是威胁我国居民健康的重大疾病,其中肺癌、肝癌、胃癌、食管癌、结直肠癌和女性乳腺癌负担明显,应进一步加强对主要肿瘤的预防和控制.%[Purpose] To analyze cancer incidence and mortality data collected from Chinese cancer registries to evaluate cancer burden in 2007. [ Methods] In 2010, 48 cancer registries reported cancer incidence and mortality data of 2007. Among them 38 registries' data met the

  2. Incidence and mortality of cancers appeared in the Hebei provincial cancer registry system in 2011%河北省2011年恶性肿瘤发病与死亡分析

    Institute of Scientific and Technical Information of China (English)

    贺宇彤; 梁迪; 李道娟; 翟京波; 刘波; 朱俊卿; 单保恩

    2015-01-01

    Objective To analyze the cancer incidence and mortality in Hebei cancer registry available areas in 2011.Methods Data were collected from 8 population-based cancer registries systems in Hebei province.Incidence and mortality rates stratified by areas (urban/rural),sex,age group and cancer site were analyzed.10 common cancers in different groups,proportions and cumulative rates were calculated.The Chinese population census in the year 2000 and Segi's populations were used for age-standardized incidence/mortality rates.Results In all the 8 cancer registries that covering a total of 4 573 293 population (2 139 779 in urban and 2 433 514 in rural areas),data was used for the analysis.The total new cancer incidence cases and deaths were 11 269 and 7 477,respectively.All the morphologically verified cancer cases (MV%) accounted for 75.26% while 3.85% of the incident cases were identified only through death certification records (DCO%).The mortality to incidence ratio appeared as 0.66.The crude incidence appeared in the Hebei cancer registration areas was 246.41/105 (264.55/105 in males and 227.75/105 in females).The age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population (ASIRW) appeared as 207.13/105 and 206.61/105 respectively,with the cumulative incidence rates as (0-74 age years old) 23.57%.The cancer incidence and ASIRC were 242.64/105 and 200.19/105 in urban areas,whereas 249.72/105 and 214.11/105,respectively in rural areas.The crude mortality in Hebei cancer registration areas was 163.49/105(196.54/105 in male,129.51/105 in female),with age-standardized mortality rates by Chinese standard population (ASMRC) and by world standard population (ASMRW) as 144.48/105 and 147.69/105.The cumulative mortality rate (0-74 age years old) was 14.71%.The cancer mortality (167.91/105) in rural areas seemed higher than the mortality (158.47/105) in urban areas.The most common sites of cancers were

  3. International practice of rheumatoid arthritis registries. Foreign registries

    OpenAIRE

    Azamat Makhmudovich Satybaldyev; D E Karateev

    2014-01-01

    Review of the USA, Argentina, Australia, Japan, and European Union registries is presented. The similarities and differences between the registries in terms of populations of rheumatoid arthritis patients and the target goals are studied

  4. Psoriatic Arthritis Registries.

    Science.gov (United States)

    Sarzi-Puttini, Piercarlo; Varisco, Valentina; Ditto, Maria Chiara; Benucci, Maurizio; Atzeni, Fabiola

    2015-11-01

    The introduction of new biological drugs for the treatment of rheumatoid arthritis and spondyloarthritis has led to the creation of a number of registries in Europe and the United States. Most of them are sponsored by national rheumatology societies, and provide information that is useful in clinical practice concerning the clinical characteristics, efficacy, and safety of all licensed biological drugs. Their findings also help to improve our understanding of the quality of life and working ability of patients receiving biological drugs, and suggest methods for allocating resources. However, there are only a few registries for psoriatic arthritis, and efforts should be made to increase their number to obtain further reliable and useful data.

  5. The incidence rate of corpus uteri cancer among females in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

    OpenAIRE

    Alghamdi IG; Hussain II; Alghamdi MS; El-Sheemy MA

    2014-01-01

    Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, UK; 2Ministry of Health, General Directorate of Health Affairs, Al-Baha, Kingdom of Saudi Arabia; 3Research and Development, Lincoln Hospital, Lincolnshire Hospitals NHS Trust, Lincoln, UK Background: The present study reviews the epidemiological data on corpus uteri cancer among Saudi women, including its frequency, crude incidence rate, and age-standardized inc...

  6. The incidence rate of female breast cancer in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001-2008

    OpenAIRE

    Alghamdi IG; Hussain II; Alghamdi MS; El-Sheemy MA

    2013-01-01

    Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, United Kingdom; 2Ministry of Health, General Directorate of Health Affairs Al-Baha, Kingdom of Saudi Arabia; 3Lincoln Hospital, Research and Development, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, United Kingdom Background: This study presents descriptive epidemiological data related to breast cancer cases diagnosed from 2001 to 2008 a...

  7. Validity of the recorded International Classification of Diseases, 10th edition diagnoses codes of bone metastases and skeletal-related events in breast and prostate cancer patients in the Danish National Registry of Patients

    Directory of Open Access Journals (Sweden)

    Annette Østergaard Jensen

    2009-07-01

    Full Text Available Annette Østergaard Jensen1, Mette Nørgaard1, Mellissa Yong2, Jon P Fryzek2, Henrik Toft Sørensen11Department of Clinical Epidemiology, Aarhus University hospital, Århus, Denmark; 2Global Epidemiology, Amgen inc., Thousands Oaks, CA, USAObjective: The clinical history of bone metastases and skeletal-related events (SREs secondary to cancers is not well understood. In support of studies of the natural history of bone metastases and SREs in Danish prostate and breast cancer patients, we estimated the sensitivity and specificity of hospital diagnoses for bone metastases and SREs (ie, radiation therapy to the bone, pathological or osteoporotic fractures, spinal cord compression and surgery to the bone in a nationwide medical registry in Denmark.Study design and setting: In North Jutland County, Denmark, we randomly sampled 100 patients with primary prostate cancer and 100 patients with primary breast cancer diagnoses from the National Registry of Patients (NRP, during the period January 1st, 2000 to December 31st, 2000 and followed them for up to five years after their cancer diagnosis. We used information from medical chart reviews as the reference for estimating sensitivity, and specificity of the NRP International Classification of Diseases, 10th edition (ICD-10 coding for bone metastases and SRE diagnoses. Results: For prostate cancer, the overall sensitivity of bone metastases or SRE coding in the NRP was 0.54 (95% confidence interval [CI]: 0.39–0.69, and the specificity was 0.96 (95% CI: 0.87–1.00. For breast cancer, the overall sensitivity of bone metastases or SRE coding in the NRP was 0.58 (95% CI: 0.34–0.80, and the specificity was 0.95 (95% CI: 0.88–0.99. Conclusion: We measured the validity of ICD-10 coding in the Danish NRP for bone metastases and SREs in prostate and breast cancer patients and found it has adequate sensitivity and high specificity. The NRP remains a valuable tool for clinical epidemiological studies of bone

  8. Malaysian Twin Registry.

    Science.gov (United States)

    Jahanfar, Shayesteh; Jaffar, Sharifah Halimah

    2013-02-01

    The National Malaysian Twin Registry was established in Royal College of Medicine, Perak, University Kuala Lumpur (UniKL) in June 2008 through a grant provided by UniKL. The general objective is to facilitate scientific research involving participation of twins and their family members in order to answer questions of health and wellbeing relevant to Malaysians. Recruitment is done via mass media, poster, and pamphlets. We now have 266 adult and 204 children twins registered. Several research projects including reproductive health study of twins and the role of co-bedding on growth and development of children are carried out. Registry holds annual activities for twins and seeks to provide health-related information for twins. We seek international collaboration.

  9. National registry of myocardial infarction

    OpenAIRE

    Amin Daemi; Mehdi Jafari

    2016-01-01

    The Registry of Myocardial Infarctions (MI Registry) is a national registry in Iran that collects and reports the data on myocardial infarctions. Its main advantage is that it covers the whole country and is mandatory for hospitals to register the MI cases in it. Then, the qualified individuals at the provincial and national levels can get intended reports and make appropriate decisions. Such reports, further to the policy makers and managers, can be very valuable for researchers. The regi...

  10. Using a state cancer registry to recruit young breast cancer survivors and high-risk relatives: protocol of a randomized trial testing the efficacy of a targeted versus a tailored intervention to increase breast cancer screening

    OpenAIRE

    Katapodi, Maria C; Northouse, Laurel L.; Schafenacker, Ann M; Duquette, Debra; Duffy, Sonia A; Ronis, David L.; Anderson, Beth; Janz, Nancy K.; McLosky, Jennifer; Milliron, Kara J; Merajver, Sofia D; Duong, Linh M; Copeland, Glenn

    2013-01-01

    Background The Michigan Prevention Research Center, the University of Michigan Schools of Nursing, Public Health, and Medicine, and the Michigan Department of Community Health propose a multidisciplinary academic-clinical practice three-year project to increase breast cancer screening among young breast cancer survivors and their cancer-free female relatives at greatest risk for breast cancer. Methods/design The study has three specific aims: 1) Identify and survey 3,000 young breast cancer s...

  11. Progress against non-Hodgkin lymphoma in the Netherlands: Incidence, patterns of care and prognosis since 1989 (Studies with cancer registry data)

    NARCIS (Netherlands)

    S.A.M. van de Schans (Saskia)

    2010-01-01

    textabstractCancers arising from the haematopoietic and lymphoid tissue comprise a heterogeneous group of malignancies with diverse clinical and biological features. The World Health Organization (WHO) classification of Haematopoietic and Lymphoid tissue, classified these cancers based on histologic

  12. Incidences of overall and site specific cancers in TNFα inhibitor treated patients with rheumatoid arthritis and other arthritides - a follow-up study from the DANBIO Registry

    DEFF Research Database (Denmark)

    Dreyer, Lene; Mellemkjær, Lene; Andersen, Anne Rødgaard;

    2013-01-01

    To investigate the incidence of cancer in arthritis patients treated with or without TNFα inhibitors (TNF-I).......To investigate the incidence of cancer in arthritis patients treated with or without TNFα inhibitors (TNF-I)....

  13. The survival of patients with Stage III Colon Cancer is improved in HNPCC compared with sporadic cases. A Danish registry based study

    DEFF Research Database (Denmark)

    Brixen, Line Merrild; Bernstein, Inge Thomsen; Bülow, Steffen;

    2013-01-01

    AIM: Patients with hereditary non-polyposis colorectal cancer (HNPCC) seem to have a better prognosis than those with sporadic colon cancer (CC)s. The aim was to compare survival after stage III CC in patients with HNPCC with those having sporadic CC. METHOD: 230 patients with hereditary cancer...

  14. Worldwide variability in deceased organ donation registries

    OpenAIRE

    Rosenblum, Amanda M.; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-01-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of regis...

  15. A Complex Contraception Registry

    Science.gov (United States)

    2014-12-02

    Diabetes; Cardiovascular Disease; Epilepsy; Migraine; Neurological Disorders; Cancer; Bariatric Surgery Candidate; Organ or Tissue Transplant; Complications; Lupus Erythematosus, Systemic; Other Hematologic Conditions; Other Venous Embolism and Thrombosis

  16. Employment and insurance outcomes and factors associated with employment among long-term thyroid cancer survivors : a population-based study from the PROFILES registry

    NARCIS (Netherlands)

    Tamminga, S. J.; Bultmann, U.; Husson, O.; Kuijpens, J. L. P.; Frings-Dresen, M. H. W.; de Boer, Angela G. E. M.

    2016-01-01

    To obtain insight into employment and insurance outcomes of thyroid cancer survivors and to examine the association between not having employment and other factors including quality of life. In this cross-sectional population-based study, long-term thyroid cancer survivors from the Netherlands parti

  17. Retinoblastoma Registry report--Hospital Kuala Lumpur experience.

    Science.gov (United States)

    Jamalia, R; Sunder, R; Alagaratnam, J; Goh, P P

    2010-06-01

    Retinoblastoma is a childhood ocular cancer. The aim of this paper is to describe the clinical and epidemiological characteristics of patients with retinoblastoma in a major paediatric ophthalmology center in the country. Retrospective information was collected through the retinoblastoma registry. Late presentation with advanced staging is a major problem.

  18. The potential value of sibling controls compared with population controls for association studies of lifestyle-related risk factors: an example from the Breast Cancer Family Registry

    OpenAIRE

    Milne, Roger L.; John, Esther M.; Julia A. Knight; Dite, Gillian S; Southey, Melissa C; Giles, Graham G.; Apicella, Carmel; West, Dee W.; Andrulis, Irene L; Whittemore, Alice S; Hopper, John L

    2011-01-01

    Background A previous Australian population-based breast cancer case-control study found indirect evidence that control participation, although high, was not random. We hypothesized that unaffected sisters may provide a more appropriate comparison group than unrelated population controls.

  19. Do female cancer patients display better survival rates compared with males? Analysis of the Korean National Registry data, 2005-2009.

    Directory of Open Access Journals (Sweden)

    Kyu-Won Jung

    Full Text Available BACKGROUND: Sex differences have been reported in the prognosis of certain cancers. In this study, we investigated whether Korean females display better survival rates compared with male patients for solid tumor sites. METHODS: We analyzed data from the Korean National Cancer Incidence Database from 599,288 adult patients diagnosed with solid cancers between 2005 and 2009. Patients were followed until December 2010. We applied a relative excess risk (RER model adjusting for year of follow-up, age at diagnosis, and stage at diagnosis. RESULTS: For all solid cancer sites combined, women displayed an 11% lower risk of death compared to men (RER 0.89; 95% CI 0.88-0.90 after adjusting for year of follow-up, age, stage, and case mix. Women showed significantly lower RERs for the following sites: head/neck, esophagus, small intestine, liver, nasal cavities, lung, bone/cartilages, melanoma of skin, soft tissue, brain and CNS, and thyroid. In contrast, women displayed a poorer prognosis than did men for colorectal, laryngeal, kidney and bladder cancer. However, the survival gaps between men and women narrowed by increase in age; female patients over 75 years of age displayed a 3% higher RER of death compared with males in this age group. CONCLUSIONS: Female cancer patients display an improved survival for the majority of solid tumor sites, even after adjustment for age and stage. Age at diagnosis was the major contributor to the women's survival advantage.

  20. The SystHERs registry: an observational cohort study of treatment patterns and outcomes in patients with human epidermal growth factor receptor 2–positive metastatic breast cancer

    International Nuclear Information System (INIS)

    Amplification of the human epidermal growth factor receptor 2 (HER2) gene occurs in approximately 20% of invasive breast cancer cases and is associated with a more aggressive disease course than HER2-negative breast cancer. HER2-targeted therapies have altered the natural history of HER2-positive breast cancer, a trend that will likely further improve with the recent approval of new agents. A prospective, observational cohort study was designed and initiated to provide real-world insights into current treatment patterns, long-term survival, and patients’ experiences with initial and subsequent treatments for HER2-positive metastatic breast cancer (MBC). The Systematic Therapies for HER2-positive Metastatic Breast Cancer Study (SystHERs) is a US-based prospective observational cohort study enrolling patients ≥18 years of age with recently diagnosed HER2-positive MBC not previously treated with systemic therapy in the metastatic setting. The primary objective of the study is to identify treatment patterns and clinical outcomes in recently diagnosed patients in a variety of practice settings. Secondary objectives include comparative efficacy, safety, and patient-reported outcomes (PROs). Healthcare resource utilization is an exploratory end point. Tumor tissue and blood sample collection is optional. The SystHERs registry will enroll approximately 1000 patients over a 3-year period, after which the study will continue for ≥5 years, allowing for a maximum follow-up of 8 years. The treating physician will determine all care and the frequency of visits. PRO measures will be completed at study enrollment and every 90 days. Clinical data will be abstracted quarterly from patient records. The first patient was enrolled in June 2012, and preliminary descriptive data based on 25% to 30% of the final study population are expected at the end of 2013, and as of April 25, 2014, 386 patients are enrolled. SystHERs is expected to provide in-depth data on demographic

  1. Health-related quality of life is associated with physical activity levels among colorectal cancer survivors: a longitudinal, 3-year study of the PROFILES registry

    NARCIS (Netherlands)

    Husson, O.; Mols, F.; Ezendam, N.P.; Schep, G.; Poll-Franse, L.V. van de

    2015-01-01

    PURPOSE: The present study aims to examine the longitudinal relation between physical activity (PA) and health-related quality of life (HRQoL) among colorectal cancer (CRC) survivors. METHODS: Individuals diagnosed with CRC between 2000 and 2009 as registered by the Dutch population-based Eindhoven

  2. Low subjective health literacy is associated with adverse health behaviors and worse health-related quality of life among colorectal cancer survivors: results from the profiles registry

    NARCIS (Netherlands)

    Husson, O.; Mols, F.; Fransen, M.P.; Poll-Franse, L.V. van de; Ezendam, N.P.

    2015-01-01

    BACKGROUND: The objectives of the study were to examine the prevalence of health literacy (HL) among colorectal cancer (CRC) survivors and the relation between HL and health behaviors and to explore whether or not HL and health behaviors are independently associated with health-related quality of li

  3. Worldwide variability in deceased organ donation registries.

    Science.gov (United States)

    Rosenblum, Amanda M; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-08-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use. PMID:22507140

  4. Characterizing inflammatory breast cancer among Arab Americans in the California, Detroit and New Jersey Surveillance, Epidemiology and End Results (SEER) registries (1988–2008)

    OpenAIRE

    Hirko, Kelly A.; Soliman, Amr S; Banerjee, Mousumi; Ruterbusch, Julie; Harford, Joe B; Chamberlain, Robert M.; Graff, John J.; Merajver, Sofia D; Schwartz, Kendra

    2013-01-01

    Introduction Inflammatory breast cancer (IBC) is characterized by an apparent geographical distribution in incidence, being more common in North Africa than other parts of the world. Despite the rapid growth of immigrants to the United States from Arab nations, little is known about disease patterns among Arab Americans because a racial category is rarely considered for this group. The aim of this study was to advance our understanding of the burden of IBC in Arab ethnic populations by descri...

  5. Environmental Agents Service (EAS) Registry System of Records

    Data.gov (United States)

    Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...

  6. Increased incidence of myelodysplastic syndrome and acute myeloid leukemia following breast cancer treatment with radiation alone or combined with chemotherapy: a registry cohort analysis 1990-2005

    International Nuclear Information System (INIS)

    Our objective was to measure myelodysplastic syndrome (MDS) and acute myelogenous leukemia (AML) risk associated with radiation and/or chemotherapy breast cancer (BC) treatment. Our study cohort was composed of BC patients diagnosed from 1990 to 2005 and followed up for blood disorders, mean length of follow up = 7.17 years, range 2-18 years. 5790 TNM stage 0-III patients treated with surgery alone, radiation and/or chemotherapy were included. Patients without surgery (n = 111), with stem cell transplantation (n = 98), unknown or non-standard chemotherapy regimens (n = 94), lost to follow up (n = 66) or 'cancer status unknown' (n = 67) were excluded. Rates observed at our community based cancer care institution were compared to SEER incidence data for rate ratio (RR) calculations. 17 cases of MDS/AML (10 MDS/7 AML) occurred during the follow up period, crude rate .29% (95% CI = .17, .47), SEER comparison RR = 3.94 (95% CI = 2.34, 6.15). The RR of MDS in patients age < 65 comparing our cohort incidence to SEER incidence data was 10.88 (95% CI = 3.84, 24.03) and the RR of AML in patients age < 65 was 5.32 (95% CI = 1.31, 14.04). No significant increased risk of MDS or AML was observed in women ≥ 65 or the surgery/chemotherapy-only group. A RR of 3.32 (95% CI = 1.42, 6.45) was observed in the surgery/radiation-only group and a RR of 6.32 (95% CI = 3.03, 11.45) in the surgery/radiation/chemotherapy group. 3 out of 10 MDS cases died of disease at an average 3.8 months post diagnosis and five of seven AML cases died at an average 9 months post diagnosis. An elevated rate of MDS and AML was observed among breast cancer patients < 65, those treated with radiation and those treated with radiation and chemotherapy compared to available population incidence data. Although a small number of patients are affected, leukemia risk associated with treatment and younger age is significant

  7. The danish multiple sclerosis registry

    DEFF Research Database (Denmark)

    Brønnum-Hansen, Henrik; Koch-Henriksen, Nils; Stenager, Egon

    2011-01-01

    Introduction: The Danish Multiple Sclerosis (MS) Registry was established in 1956. Content: The register comprises data on all Danes who had MS in 1949 or who have been diagnosed since. Data on new cases and updated information on persons with an MS diagnosis already notified are continuously...

  8. The Danish Shoulder Arthroplasty Registry

    DEFF Research Database (Denmark)

    Rasmussen, Jeppe; Jakobsen, John; Brorson, Stig;

    2012-01-01

    (70% women) were reported to the registry between January 2006 and December 2008. Mean age at surgery was 69 years (SD 12). The most common indications were a displaced proximal humeral fracture (54%) or osteoarthritis (30%). 61% were stemmed hemiarthroplasties, 28% resurfacing hemiarthroplasties, 8...

  9. 27 CFR 24.115 - Registry number.

    Science.gov (United States)

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry number. 24.115... OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded...

  10. A renal registry for Africa: first steps.

    Science.gov (United States)

    Davids, M Razeen; Eastwood, John B; Selwood, Neville H; Arogundade, Fatiu A; Ashuntantang, Gloria; Benghanem Gharbi, Mohammed; Jarraya, Faiçal; MacPhee, Iain A M; McCulloch, Mignon; Plange-Rhule, Jacob; Swanepoel, Charles R; Adu, Dwomoa

    2016-02-01

    There is a dearth of data on end-stage renal disease (ESRD) in Africa. Several national renal registries have been established but have not been sustainable because of resource limitations. The African Association of Nephrology (AFRAN) and the African Paediatric Nephrology Association (AFPNA) recognize the importance of good registry data and plan to establish an African Renal Registry. This article reviews the elements needed for a successful renal registry and gives an overview of renal registries in developed and developing countries, with the emphasis on Africa. It then discusses the proposed African Renal Registry and the first steps towards its implementation. A registry requires a clear purpose, and agreement on inclusion and exclusion criteria, the dataset and the data dictionary. Ethical issues, data ownership and access, the dissemination of findings and funding must all be considered. Well-documented processes should guide data collection and ensure data quality. The ERA-EDTA Registry is the world's oldest renal registry. In Africa, registry data have been published mainly by North African countries, starting with Egypt and Tunisia in 1975. However, in recent years no African country has regularly reported national registry data. A shared renal registry would provide participating countries with a reliable technology platform and a common data dictionary to facilitate joint analyses and comparisons. In March 2015, AFRAN organized a registry workshop for African nephrologists and then took the decision to establish, for the first time, an African Renal Registry. In conclusion, African nephrologists have decided to establish a continental renal registry. This initiative could make a substantial impact on the practice of nephrology and the provision of services for adults and children with ESRD in many African countries.

  11. Forensic Analysis of Windows Registry Against Intrusion

    Directory of Open Access Journals (Sweden)

    Haoyang Xie

    2012-03-01

    Full Text Available Windows Registry forensics is an important branch of computer and network forensics. Windows Registry is often considered as the heart of Windows Operating Systems because it contains allof the configuration setting of specific users, groups, hardware, software, and networks. Therefore, Windows Registry can be viewed as a gold mine of forensic evidences which could be used in courts. This paper introduces the basics of Windows Registry, describes its structure and its keys and subkeys thathave forensic values. This paper also discusses how the Windows Registry forensic keys can be applied in intrusion detection.

  12. On the Cooperation of Independent Registries

    CERN Document Server

    Miraz, Matteo

    2010-01-01

    Registries play a key role in service-oriented applications. Originally, they were neutral players between service providers and clients. The UDDI Business Registry (UBR) was meant to foster these concepts and provide a common reference for companies interested in Web services. The more Web services were used, the more companies started create their own local registries: more efficient discovery processes, better control over the quality of published information, and also more sophisticated publication policies motivated the creation of private repositories. The number and heterogeneity of the different registries - besides the decision to close the UBR are pushing for new and sophisticated means to make different registries cooperate. This paper proposes DIRE (DIstributed REgistry), a novel approach based on a publish and subscribe (P/S) infrastructure to federate different heterogeneous registries and make them exchange information about published services. The paper discusses the main motivations for the P...

  13. The Danish National Prescription Registry

    DEFF Research Database (Denmark)

    Kildemoes, Helle Wallach; Toft Sørensen, Henrik; Hallas, Jesper

    2011-01-01

    Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR...... on the dispensed drug. Conclusion: The possibility of linkage with many other nationwide individual-level data sources renders the DNPR a very powerful pharmacoepidemiological tool...

  14. The Twin Research Registry at SRI International.

    Science.gov (United States)

    Krasnow, Ruth E; Jack, Lisa M; Lessov-Schlaggar, Christina N; Bergen, Andrew W; Swan, Gary E

    2013-02-01

    The Twin Research Registry (TRR) at SRI International is a community-based registry of twins established in 1995 by advertising in local media, mainly on radio stations and in newspapers. As of August 2012, there are 3,120 same- and opposite-sex twins enrolled; 86% are 18 years of age or older (mean age 44.9 years, SD 16.9 years) and 14% less than 18 years of age (mean age 8.9 years, SD 4.5); 67% are female, and 62% are self-reported monozygotic (MZ). More than 1,375 twins have participated in studies over the last 15 years in collaboration with the University of California Medical Center in San Francisco, the University of Texas MD Anderson Cancer Center, and the Stanford University School of Medicine. Each twin completes a registration form with basic demographic information either online at the TRR Web site or during a telephone interview. Contact is maintained with members by means of annual newsletters and birthday cards. The managers of the TRR protect the confidentiality of twin data with established policies; no information is given to other researchers without prior permission from the twins; and all methods and procedures are reviewed by an Institutional Review Board. Phenotypes studied thus far include those related to nicotine metabolism, mutagen sensitivity, pain response before and after administration of an opioid, and a variety of immunological responses to environmental exposures, including second-hand smoke and vaccination for seasonal influenza virus and Varicella zoster virus. Twins in the TRR have participated in studies of complex, clinically relevant phenotypes that would not be feasible to measure in larger samples. PMID:23084148

  15. [Current registry studies of acute ischemic stroke].

    Science.gov (United States)

    Veltkamp, R; Jüttler, E; Pfefferkorn, T; Purrucker, J; Ringleb, P

    2012-10-01

    Study registries offer the opportunity to evaluate the effects of new therapies or to observe the consequences of new treatments in clinical practice. The SITS-MOST registry confirmed the validity of findings from randomized trials on intravenous thrombolysis concerning safety and efficacy in the clinical routine. Current study registries concerning new interventional thrombectomy techniques suggest a high recanalization rate; however, the clinical benefit can only be evaluated in randomized, controlled trials. Similarly, the experiences of the BASICS registry on basilar artery occlusion have led to the initiation of a controlled trial. The benefit of hemicraniectomy in malignant middle cerebral artery infarction has been demonstrated by the pooled analysis of three randomized trials. Numerous relevant aspects are currently documented in the DESTINY-R registry. Finally, the recently started RASUNOA registry examines diagnostic and therapeutic aspects of ischemic and hemorrhagic stroke occurring during therapy with new oral anticoagulants.

  16. Estimating the completeness of German cancer registries

    OpenAIRE

    Haberland, Jörg; Schön, D.; Bertz, Joachim; Görsch, B

    2003-01-01

    Das 1995 in Deutschland in Kraft getretene Bundeskrebsregistergesetz verpflichtete alle Bundesländer, epidemiologische Krebsregister einzurichten. Dieses inzwischen schon wieder ausgelaufene Gesetz hat die Krebsregistrierung in den Bundesländern stark vorangetrieben und zur Etablierung zahlreicher epidemiologischer Register geführt. Insbesondere für die sich im Aufbau befindlichen Krebsregister ist es wichtig, Vollzähligkeitsschätzungen durchzuführen, da ein Register nur mit einem ausreichend...

  17. Tools and data services registry

    DEFF Research Database (Denmark)

    Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé;

    2016-01-01

    a spectrum of scientific disciplines. The corpus of documentation of these resources is fragmented across the Web, with much redundancy, and has lacked a common standard of information. The outcome is that scientists must often struggle to find, understand, compare and use the best resources for the task...... is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners.As of September 2015, the registry includes 1633 resources, with depositions from 91 individual registrations including 40 institutional providers and 51 individuals. With community support...

  18. Use of general practice, diagnostic investigations and hospital services before and after cancer diagnosis - a population-based nationwide registry study of 127,000 incident adult cancer patients

    DEFF Research Database (Denmark)

    Christensen, Karina Garnier; Fenger-Grøn, Morten; Flarup, Kaare Rud;

    2012-01-01

    ,272,100 controls. Monthly consultation frequencies, monthly proportions of persons receiving health services and three-month incidence rate ratios for one year before and one year after the cancer diagnosis were calculated. Data were analysed separately for women and men. RESULTS: Three months before...... one month after diagnosis and the number of hospital contacts three months after diagnosis. The proportion of cancer patients receiving each of these three types of health services remained more than 10% above that of the reference population from two months before diagnosis until the end of the study...

  19. Private provider participation in statewide immunization registries

    Directory of Open Access Journals (Sweden)

    Cowan Anne E

    2006-02-01

    Full Text Available Abstract Background Population-based registries have been promoted as an effective method to improve childhood immunization rates, yet rates of registry participation in the private sector are low. We sought to describe, through a national overview, the perspectives of childhood immunization providers in private practice regarding factors associated with participation or non-participation in immunization registries. Methods Two mailed surveys, one for 264 private practices identified as registry non-participants and the other for 971 identified as registry participants, from 15 of the 31 states with population-based statewide immunization registries. Frequency distributions were calculated separately for non-participants and participants regarding the physician-reported factors that influenced decisions related to registry participation. Pearson chi-square tests of independence were used to assess associations among categorical variables. Results Overall response rate was 62% (N = 756. Among non-participants, easy access to records of vaccines provided at other sites (N = 101, 68% and printable immunization records (N = 82, 55% were most often cited as "very important" potential benefits of a registry, while the most commonly cited barriers to participation were too much cost/staff time (N = 36, 38% and that the practice has its own system for recording and monitoring immunizations (N = 35, 37%. Among registry participants, most reported using the registry to input data on vaccines administered (N = 326, 87% and to review immunization records of individual patients (N = 302, 81%. A minority reported using it to assess their practice's immunization coverage (N = 110, 29% or generate reminder/recall notices (N = 54, 14%. Few participants reported experiencing "significant" problems with the registry; the most often cited was cost/staff time to use the registry (N = 71, 20%. Conclusion Most registry participants report active participation with few

  20. Malignancies in Swedish persons with haemophilia: a longitudinal registry study.

    Science.gov (United States)

    Lövdahl, Susanna; Henriksson, Karin M; Baghaei, Fariba; Holmström, Margareta; Berntorp, Erik; Astermark, Jan

    2016-09-01

    The aim of the study was to investigate, over time, the incidence of and mortality due to malignant diseases among persons with haemophilia, compared to matched controls. Persons with haemophilia A or B were enrolled via registries at each haemophilia centre, as well as from the National Patient Registry, and were compared to five sex and age-matched controls per patient. Data from the national Cancer Registry were linked to the study participants. A total of 1431 persons with haemophilia and 7150 matched controls were enrolled. Between the years 1972 and 2008, 164 malignancies were reported. The most common type of cancer among patients was prostate cancer, followed by haematologic malignancies, including lymphoma and leukaemia, which were significantly more frequent in patients [n = 35 (2.4%) vs. n = 60 (0.8%); P < 0.001]. Malignancies in bladder and other urinary organs were also significantly different [n = 21 (1.5%) vs. n = 46 (0.6%); P < 0.01]. The overall incidence rate ratio of malignancies per 1000 person-years compared to the controls was 1.3 [95% confidence interval (CI) 1.1, 1.6]. In subgroup analysis, the corresponding incidence rate ratios per 1000 person-years for persons with severe haemophilia was 1.7 (95% CI 0.9, 3.1) and that for mild/moderate haemophilia 1.1 (95% CI 0.8, 1.5). Swedish persons with haemophilia had a significantly higher incidence of malignant diseases than controls. These were primarily haematologic malignancies and cancer in urinary organs, and the difference independent of any co-infections with HIV and/or viral hepatitis. The findings indicate the importance of further studies and close follow-up of malignancies in persons with haemophilia. PMID:26974329

  1. Correcting for catchment area nonresidency in studies based on tumor-registry data

    International Nuclear Information System (INIS)

    We discuss the effect of catchment area nonresidency on estimates of cancer incidence from a tumor-registry-based cohort study and demonstrate that a relatively simple correction is possible in the context of Poisson regression analysis if individual residency histories or the probabilities of residency are known. A comparison of a complete data maximum likelihood analysis with several Poisson regression analyses demonstrates the adequacy of the simple correction in a large simulated data set. We compare analyses of stomach-cancer incidence from the Radiation Effects Research Foundation tumor registry with and without the correction. We also discuss some implications of including cases identified only on the basis of death certificates. (author)

  2. Windows registry forensics advanced digital forensic analysis of the Windows registry

    CERN Document Server

    Carvey, Harlan

    2011-01-01

    Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.

  3. Service registry design: an information service approach

    NARCIS (Netherlands)

    Ferreira Pires, Luis; Oostrum, van Arjen; Wijnhoven, Fons; Wang, J.

    2010-01-01

    A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues, wh

  4. 50 CFR 600.1410 - Registry process.

    Science.gov (United States)

    2010-10-01

    ... 50 Wildlife and Fisheries 8 2010-10-01 2010-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  5. The Western Denmark Cardiac Computed Tomography Registry

    DEFF Research Database (Denmark)

    Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans Henrik;

    2015-01-01

    BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...

  6. Incidence and mortality of female breast cancer in China-a report from 32 Chinese cancer registries,2003-2007%中国女性乳腺癌的发病和死亡现况——全国32个肿瘤登记点2003-2007年资料分析报告

    Institute of Scientific and Technical Information of China (English)

    黄哲宙; 陈万青; 吴春晓; 郑荣寿; 陈建国; 杨念念; 王宁; 张思维; 郑莹

    2012-01-01

    目的:描述2003-2007年中国女性乳腺癌的发病和死亡情况.方法:从经审核合格的全国32个肿瘤登记点收集2003-2007年女性乳腺癌发病、死亡和相应的人口数据,对数据进行汇总和描述分析.结果:2003-2007年全国32个肿瘤登记点女性乳腺癌合计发病率为41.64/10万,居女性癌症发病的第1位;合计死亡率为9.63/10万,居女性癌症死因的第6位.女性乳腺癌在全国城市地区的发病率和死亡率均高于农村地区,城市地区发病率是农村地区的3.04倍,城市地区死亡率是农村地区的1.92倍.肿瘤登记点合计女性乳腺癌发病率在GLOBOCAN 2008统计的184个国家中排位第110位,死亡率排位第172位.结论:女性乳腺癌已经成为中国女性最常见的癌症之一,中国城市女性乳腺癌的发病率和死亡率水平显著高于农村,但中国女性乳腺癌的发病率和死亡率在世界范围仍处于中低水平.%Objective: To describe the incidence and mortality of female breast cancer in China during 2003-2007. Methods: The incidence and mortality data of female breast cancer and the corresponding population data from 32 eligible cancer registries in China during 2003-2007 were collected and analyzed. Results: The combined crude incidence rate of female breast cancer during 2003-2007 was 41.64 per 100 000, which was the highest among female cancer incidence rates. The combined crude mortality rate of female breast cancer was 9.63 per 100 000, which was ranked as the sixth among the mortality rates of all female cancers. The incidence rate was 3.04 times higher and the mortality rate was 1.92 times higher in urban areas than those in rural areas. Compared to the incidence and mortality rates of 184 regions provided from GLABOCAN 2008 database, the female breast cancer incidence in China was ranked as the one hundred and tenth, and the mortality was ranked as the one hundred and seventy-second. Conclusion: Breast cancer has been becoming

  7. Breast Cancer in Systemic Lupus Erythematosus

    DEFF Research Database (Denmark)

    Tessier Cloutier, B; Clarke, A E; Ramsey-Goldman, R;

    2013-01-01

    Evidence points to a decreased breast cancer risk in systemic lupus erythematosus (SLE). We analyzed data from a large multisite SLE cohort, linked to cancer registries.......Evidence points to a decreased breast cancer risk in systemic lupus erythematosus (SLE). We analyzed data from a large multisite SLE cohort, linked to cancer registries....

  8. Central registry in psychiatry: A structured review

    Directory of Open Access Journals (Sweden)

    Jyoti Prakash

    2014-01-01

    Full Text Available Background: Central registry in psychiatry is being practiced in few countries and has been found useful in research and clinical management. Role of central registry has also expanded over the years. Materials and Methods: All accessible internet database Medline, Scopus, Embase were accessed from 1990 till date. Available data were systematically reviewed in structured manner and analyzed. Results: Central registry was found useful in epidemiological analysis, association studies, outcome studies, comorbidity studies, forensic issue, effective of medication, qualitative analysis etc., Conclusion: Central registry proves to be effective tool in quantitative and qualitative understanding of psychiatry practice. Findings of studies from central registry can be useful in modifying best practice and evidence based treatment in psychiatry.

  9. Substance Identification Information from EPA's Substance Registry

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal...

  10. EPA Facility Registry Service (FRS): RBLC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  11. EPA Facility Registry Service (FRS): SDWIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  12. EPA Facility Registry Service (FRS): RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  13. EPA Facility Registry Service (FRS): TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  14. EPA Facility Registry Service (FRS): ACRES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of sites that link...

  15. EPA Facility Registry Service (FRS): BRAC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  16. The United States Transuranium and Uranium Registries

    International Nuclear Information System (INIS)

    The United States Transuranium and Uranium Registries are unique parallel research programs devoted to the study of the actinide elements in man. The primary mission of the Registries is to verify and ensure the adequacy and applicability of radiation protection standards for the actinides. To accomplish this task, the Registries utilize tissues obtained postmortem from informed volunteer donors with confirmed or high likelihood of exposure to plutonium, americium, or other actinides. These are collected at autopsy and radiochemically analyzed for actinide content. The results, along with relevant details of occupational and exposure history, medical history and health physics data are used to determine the distribution, biokinetics and dosimetry of the actinides in humans, and to correlate estimates of deposition and dose made during life with postmortem findings. Other important applications of the Registries' research is scaling of animal studies to man and validation or refinement of biokinetic models on which the safety standards are based

  17. EPA Facility Registry Service (FRS): OIL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil...

  18. EPA Facility Registry Service (FRS): RADINFO

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  19. EPA Facility Registry Service (FRS): NCDB

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  20. EPA Facility Registry Service (FRS): RCRA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  1. EPA Facility Registry Service (FRS): LANDFILL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste...

  2. EPA Facility Registry Service (FRS): CAMDBS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  3. EPA Facility Registry System (FRS): NCES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  4. EPA Facility Registry Service (FRS): NEI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  5. EPA Facility Registry Service (FRS): BIA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  6. EPA Facility Registry System (FRS): NEPT

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  7. EPA Facility Registry Service (FRS): ICIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  8. The Egyptian clinical trials’ registry profile: Analysis of three trial registries (International Clinical Trials Registry Platform, Pan-African Clinical Trials Registry and clinicaltrials.gov

    Directory of Open Access Journals (Sweden)

    Ahmed A. Zeeneldin

    2016-01-01

    Full Text Available Registering clinical trials (CTs in public domains enhances transparency, increases trust in research, improves participation and safeguards against publication bias. This work was done to study the profile of clinical research in Egypt in three CT registries with different scopes: the WHO International CT Registry Platform (ICTRP, the continental Pan-African CT Registry (PACTR and the US clinicaltrials.gov (CTGR. In March 2014, ICTRP, PACTR and CTGR were searched for clinical studies conducted in Egypt. It was found that the number of studies conducted in Egypt (percentage was 686 (0.30% in ICTRP, 56 (11.3% in PACTR and 548 (0.34% in CTGR. Most studies were performed in universities and sponsored by university/organization, industry or individual researchers. Inclusion of adults from both genders predominated. The median number of participants per study in the three registries ranged between 63 and 155. The conditions researched differed among the three registries and study purpose was mostly treatment followed by prevention. Endpoints were mostly efficacy followed by safety. Observational:Interventional studies (i.e. clinical trials represented 15.5%:84.5% in ICTRP, 0%:100% in PACTR and 16.4%:83.6% in CTGR. Most interventions were drugs or procedures. Observational studies were mostly prospective and cohort studies. Most CTs were phase 3 and tested drugs or procedures. Parallel group assignment and random allocation predominated. Blinding was implemented in many of trials and was mostly double-blind. We conclude that CTs from Egypt in trial registries are apparently low and do not accurately reflect clinical research conducted in Egypt or its potential. Development of an Egyptian CT registry is eagerly needed. Registering all Egyptian CTs in public domains is highly recommended.

  9. The Danish Cerebral Palsy Registry. A registry on a specific impairment

    DEFF Research Database (Denmark)

    Uldall, P; Michelsen, S I; Topp, M;

    2001-01-01

    Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP...

  10. Essential Hypotension and Adaptability Registry

    Science.gov (United States)

    2016-05-30

    Blood Pressure; Depression; Panic Attack; Fibromyalgia; POTS; Inappropriate Sinus Tachycardia; Coronary Heart Disease; Acute Coronary Syndrome (ACS); Acute Myocardial Infarction (AMI); Cerebrovascular Disease (CVD); Transient Ischemic Attack (TIA); Atrial Fibrillation; Diabetes Mellitus; Cancer; Systolic Heart Failure; Diastolic Heart Failure; Chronic Fatigue Syndrome; Syncope; Vasovagal Syncope

  11. The National Mental Health Registry (NMHR).

    Science.gov (United States)

    Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y

    2008-09-01

    The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports.

  12. The National Mental Health Registry (NMHR).

    Science.gov (United States)

    Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y

    2008-09-01

    The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports. PMID:19227671

  13. Systematic Review of Cerebral Palsy Registries/Surveillance Groups: Relationships between Registry Characteristics and Knowledge Dissemination

    Science.gov (United States)

    Hurley, Donna S; Sukal-Moulton, Theresa; Gaebler-Spira, Deborah; Krosschell, Kristin J; Pavone, Larissa; Mutlu, Akmer; Dewald, Julius PA; Msall, Michael E

    2016-01-01

    The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems. Method A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification. Results Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors. Interpretation CP registries and surveillance programs, including novel non-traditional ones

  14. Findings from the Peutz-Jeghers syndrome registry of uruguay.

    Directory of Open Access Journals (Sweden)

    Asadur Tchekmedyian

    Full Text Available BACKGROUND: Peutz-Jeghers syndrome (PJS is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. METHODS: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. RESULTS AND DISCUSSION: 25 cases in 11 unrelated families were registered (15 males, 10 females. The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. CONCLUSION: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation.

  15. Findings from the Peutz-Jeghers syndrome registry of Uruguay

    KAUST Repository

    Tchekmedyian, Asadur

    2013-11-19

    Background: Peutz-Jeghers syndrome (PJS) is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. Methods: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. Results and discussion: 25 cases in 11 unrelated families were registered (15 males, 10 females). The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. Conclusion: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation. © 2013 Tchekmedyian et al.

  16. The Savant Syndrome Registry: A Preliminary Report.

    Science.gov (United States)

    Treffert, Darold A; Rebedew, David L

    2015-08-01

    A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills. PMID:26436185

  17. International Clinical Trials Registry Platform (ICTRP)

    Institute of Scientific and Technical Information of China (English)

    2011-01-01

    @@ Introduction The mission of the WHO Intemational Clinical Trials Registry Platform is to ensure that a complete view of research is accessible to all those involved in health care decision making.This will improve research transparency and will ultimately strengthen tha validity and value of the scientific evidence base.The registration of all interventional trials is a scientific, ethical and moral responsibility.

  18. An active registry for bioinformatics web services.

    NARCIS (Netherlands)

    Pettifer, S.; Thorne, D.; McDermott, P.; Attwood, T.; Baran, J.; Bryne, J.C.; Hupponen, T.; Mowbray, D.; Vriend, G.

    2009-01-01

    SUMMARY: The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their bioinfor

  19. Targeted development of registries of biological parts.

    Directory of Open Access Journals (Sweden)

    Jean Peccoud

    Full Text Available BACKGROUND: The design and construction of novel biological systems by combining basic building blocks represents a dominant paradigm in synthetic biology. Creating and maintaining a database of these building blocks is a way to streamline the fabrication of complex constructs. The Registry of Standard Biological Parts (Registry is the most advanced implementation of this idea. METHODS/PRINCIPAL FINDINGS: By analyzing inclusion relationships between the sequences of the Registry entries, we build a network that can be related to the Registry abstraction hierarchy. The distribution of entry reuse and complexity was extracted from this network. The collection of clones associated with the database entries was also analyzed. The plasmid inserts were amplified and sequenced. The sequences of 162 inserts could be confirmed experimentally but unexpected discrepancies have also been identified. CONCLUSIONS/SIGNIFICANCE: Organizational guidelines are proposed to help design and manage this new type of scientific resources. In particular, it appears necessary to compare the cost of ensuring the integrity of database entries and associated biological samples with their value to the users. The initial strategy that permits including any combination of parts irrespective of its potential value leads to an exponential and economically unsustainable growth that may be detrimental to the quality and long-term value of the resource to its users.

  20. The Savant Syndrome Registry: A Preliminary Report.

    Science.gov (United States)

    Treffert, Darold A; Rebedew, David L

    2015-08-01

    A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.

  1. Correlating Orphaned Windows Registry Data Structures

    Directory of Open Access Journals (Sweden)

    Damir Kahved

    2009-06-01

    Full Text Available Recently, it has been shown that deleted entries of the Microsoft Windows registry (keys may still reside in the system files once the entries have been deleted from the active database. Investigating the complete keys in context may be extremely important from both a Forensic Investigation point of view and a legal point of view where a lack of context can bring doubt to an argument. In this paper we formalise the registry behaviour and show how a retrieved value may not maintain a relation to the part of the registry it belonged to and hence lose that context. We define registry orphans and elaborate on how they can be created inadvertently during software uninstallation and other system processes. We analyse the orphans and attempt to reconstruct them automatically. We adopt a data mining approach and introduce a set of attributes that can be applied by the forensic investigator to match values to their parents. The heuristics are encoded in a Decision Tree that can discriminate between keys and select those which most likely owned a particular orphan value.

  2. Registries in systemic sclerosis: a worldwide experience.

    Science.gov (United States)

    Galluccio, Felice; Walker, Ulrich A; Nihtyanova, Svetlana; Moinzadeh, Pia; Hunzelmann, Nicholas; Krieg, Thomas; Steen, Virginia; Baron, Murray; Sampaio-Barros, Percival; Kayser, Cristiane; Nash, Peter; Denton, Chris P; Tyndall, Alan; Müller-Ladner, Ulf; Matucci-Cerinic, Marco

    2011-01-01

    SSc is a multisystem disease characterized by an unpredictable course, high mortality and resistance to therapy. The complexity and severity of SSc is a growing burden on the health-care systems. As a result, researchers are seeking new therapeutic strategies for effectively managing these patients. Disease registries are used to support care management efforts for groups of patients with chronic diseases and are meaningful to capture and track key patient information to assist the physicians in managing patients. For these reasons, SSc surveys, research associations and consortiums are pivotal to conduct ongoing research and data collection to enhance disease knowledge and support research projects. Currently, there are several national SSc registries in the UK, Germany, USA, Canada, Brazil and Australia. There is also an international registry established by the European League Against Rheumatism scleroderma trial and research (EUSTAR) called minimal essential data set (MEDS) Online, which collects data from over 8000 patients from 92 centres worldwide, including 21 European centres and 9 centres outside Europe. By collecting, analysing and disseminating data on disease progression and patient responses to long-term disease management strategies, registries help to improve understanding of the disease and keep medical professionals up to date on the latest advances. PMID:21148153

  3. Validation of the Netherlands pacemaker patient registry

    NARCIS (Netherlands)

    Dijk, WA; Kingma, T; Hooijschuur, CAM; Dassen, WRM; Hoorntje, JCA; van Gelder, LM

    1997-01-01

    This paper deals with the validation of the information stored in the Netherlands central pacemaker patient database. At this moment the registry database contains information on more than 70500 patients, 85000 pacemakers and 90000 leads. The validation procedures consisted of an internal consistenc

  4. 20 CFR 655.144 - Electronic job registry.

    Science.gov (United States)

    2010-04-01

    ... order posted on the Electronic Job Registry until the end of 50 percent of the contract period as set... 20 Employees' Benefits 3 2010-04-01 2010-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job...

  5. 37 CFR 201.25 - Visual Arts Registry.

    Science.gov (United States)

    2010-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...

  6. Towards a national trauma registry for the United Arab Emirates

    Directory of Open Access Journals (Sweden)

    Barka Ezedin

    2010-07-01

    Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.

  7. [Leather dust and systematic research on occupational tumors: the national and regional registry TUNS].

    Science.gov (United States)

    Mensi, Carolina; Sieno, Claudia; Consonni, Dario; Riboldi, Luciano

    2012-01-01

    The sinonasal cancer (SNC) are a rare tumors characterized by high occupational etiologic fraction. For this reason their incidence and etiology can be actively monitored by a dedicated cancer registry. The National Registry of these tumours is situated at the Italian Institute for Occupational Safety and Prevention (ISPESL) and is based on Regional Operating Centres (ROCs). In Lombardy Region the ROC has been established at the end of 2007 with the purpose to make a systematic surveillance and therefore to support in the most suitable way the scientific research and the prevention actions in the high risk working sectors. The aims of this surveillance are: to estimate the regional incidence of SNC, to define different sources of occupational and environmental exposure both known (wood, leather, nickel, chromium) and unknown. The registry collects all the new incident cases of epithelial SNC occurring in residents in Lombardy Region since 01.01.2008. The regional Registry is managed according to National Guidelines. Until January 2010 we received 596 cases of suspected SNC; only 91 (15%) of these were actually incident cases according to the inclusion criteria of the Registry, and they were preferentially adenocarcinoma and squamous carcinoma. In 2008 the regional age-standardized incidence rate of SNC for males and females, respectively, is 0.8 and 0.5 per 100,000. Occupational or environmental exposure to wood or leather dust is ascertained in over the 50% of cases. The occupational exposure to leather dust was duo to work in shoe factories. Our preliminary findings confirm that occupational exposure to wood and leather dusts are the more relevant risk factors for SNC. The study of occupational sectors and job activity in cases without such exposure could suggest new etiologic hypothesis.

  8. Ascertaining invasive breast cancer cases; the validity of administrative and self-reported data sources in Australia

    OpenAIRE

    Kemp, Anna; Preen, David B; Saunders, Christobel; Holman, C. D’Arcy J.; Bulsara, Max; Rogers, Kris; Roughead, Elizabeth E.

    2013-01-01

    Background Statutory State-based cancer registries are considered the ‘gold standard’ for researchers identifying cancer cases in Australia, but research using self-report or administrative health datasets (e.g. hospital records) may not have linkage to a Cancer Registry and need to identify cases. This study investigated the validity of administrative and self-reported data compared with records in a State-wide Cancer Registry in identifying invasive breast cancer cases. Methods Cases of inv...

  9. Dairy consumption and ovarian cancer risk in the Netherlands Cohort Study on diet and cancer

    OpenAIRE

    Mommers, M.; Schouten, L J; Goldbohm, R. A.; Brandt, P.A. van den

    2006-01-01

    Ovary cancer risk in relation to consumption of dairy products was investigated using a self-administered questionnaire on dietary habits and other risk factors for cancer, which was completed in 1986 by 62 573 postmenopausal women participating in the Netherlands Cohort Study. Follow-up for cancer was implemented by annual record linkage with the Netherlands Cancer Registry and a nationwide pathology registry. After 11.3 years of follow-up, data of 252 incident epithelial ovarian cancer case...

  10. METADATA REGISTRY, ISO/IEC 11179

    Energy Technology Data Exchange (ETDEWEB)

    Pon, R K; Buttler, D J

    2008-01-03

    ISO/IEC-11179 is an international standard that documents the standardization and registration of metadata to make data understandable and shareable. This standardization and registration allows for easier locating, retrieving, and transmitting data from disparate databases. The standard defines the how metadata are conceptually modeled and how they are shared among parties, but does not define how data is physically represented as bits and bytes. The standard consists of six parts. Part 1 provides a high-level overview of the standard and defines the basic element of a metadata registry - a data element. Part 2 defines the procedures for registering classification schemes and classifying administered items in a metadata registry (MDR). Part 3 specifies the structure of an MDR. Part 4 specifies requirements and recommendations for constructing definitions for data and metadata. Part 5 defines how administered items are named and identified. Part 6 defines how administered items are registered and assigned an identifier.

  11. Forensic Analysis of the Windows 7 Registry

    Directory of Open Access Journals (Sweden)

    Khawla Abdulla Alghafli

    2010-12-01

    Full Text Available The recovery of digital evidence of crimes from storage media is an increasingly time consuming process as the capacity of the storage media is in a state of constant growth. It is also a difficult and complex task for the forensic investigator to analyse all of the locations in the storage media. These two factors, when combined, may result in a delay in bringing a case to court. The concept of this paper is to start the initial forensic analysis of the storage media in locations that are most likely to contain digital evidence, the Windows Registry. Consequently, the forensic analysis process and the recovery of digital evidence may take less time than would otherwise be required. In this paper, the Registry structure of Windows 7 is discussed together with several elements of information within the Registry of Windows 7 that may be valuable to a forensic investigator. These elements were categorized into five groups which are system, application, networks, attached devices and the history lists. We have discussed the values of identified elements to a forensic investigator. Also, a tool was implemented to perform the function of extracting these elements and presents them in usable form to a forensics investigator.

  12. Registry of Mineral and Petroleum Titles

    Energy Technology Data Exchange (ETDEWEB)

    Maclellan, I. M.; Kaizer, J. L.; McCulloch, P. D.; Ratcliffe, R.; Wenning, A. S. [Nova Scotia Dept. of Natural Resources, Halifax, NS (Canada)

    2000-07-01

    Activities of the Nova Scotia Registry of Mineral and Petroleum Titles are described, including statistical information about staking and mining activity in the province during 1999. In terms of activities, the Registry receives applications and issues licenses and leases for mineral and petroleum rights, receives statements of exploration expenditures and assessment reports that pertain to renewal of licenses and leases, maintains maps showing the disposition of lands under license or lease, and maintains a system of prospector registration. In addition, the Registry processes applications for underground gas storage rights and treasure trove rights and maintains a database of information concerning production and employment in Nova Scotia mines and quarries. At the end 1999 there were 230,660 hectares under exploration licence. Exploration expenditures, including engineering, economic and feasibility studies during 1999 totalled $4.2 million, mostly by junior mining companies searching for industrial mineral commodities. Mining activity during 1999 generated revenues of $340 million. Coal production dropped by 25 per cent, due mainly to the closure of the Phalen Mine. Gypsum production was up to 7.9 million tonnes; shipments of cement, barite and clay products also increased during 1999; salt production remained unchanged from 1998 with 842,000 tonnes. Production of construction aggregates totalled 10.6 million tonnes, down slightly from the year before. Mineral industry employment was roughly 2,500 persons, down by 24 per cent from 1998 levels, due primarily to the closure of the Phalen Mine.

  13. Annual report to the nation on the status of cancer, 1975-2006, featuring colorectal cancer trends and impact of interventions (risk factors, screening, and treatment) to reduce future rates

    NARCIS (Netherlands)

    B.K. Edwards (Brenda); E. Ward (Elizabeth); B.A. Kohler (Betsy); C. Eheman (Christie); A. Zauber (Ann); R.N. Anderson (Robert); A. Jemal (Ahmedin); M.J. Schymura (Maria); I. Lansdorp-Vogelaar (Iris); L.C. Seeff (Laura); M. van Ballegooijen (Marjolein); S.L. Goede (Luuk); L.A.G. Ries (Lynn)

    2010-01-01

    textabstractBACKGROUND. The American Cancer Society, the Centers for Disease Control and Prevention (CDC), the National Cancer Institute (NCI), and the North American Association of Central Cancer Registries (NAACCR) collaborate annually to provide updated information regarding cancer occurrence and

  14. Registries as Tools for Clinical Excellence and the Development of the Pelvic Floor Disorders Registry.

    Science.gov (United States)

    Weber LeBrun, Emily E

    2016-03-01

    Surgical device innovation has been less regulated than drug development, allowing integration of unproven techniques and materials into standard practice. Successful device registries gather information on patient outcomes and can provide postmarket surveillance of new technologies and allow comparison with currently established treatments or devices. The Pelvic Floor Disorders Registry was developed in collaboration with the Food and Drug Administration, device manufacturers, and other stakeholders to serve as a platform for industry-sponsored postmarket device surveillance, investigator-initiated research, and quality and effectiveness benchmarking, all designed to improve the care of women with pelvic floor disorders. PMID:26880512

  15. The Danish Cerebral Palsy Registry. A registry on a specific impairment

    DEFF Research Database (Denmark)

    Uldall, P; Michelsen, Susan Ishøy; Topp, M;

    2001-01-01

    Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP...... are collected from paediatric departments and one special institution for disabled children. The children are included by a child neurologist and an obstetrician, and information on pregnancy, birth, neonatal period, impairments and demographic data on the child and mother are registered in a standard form...

  16. [Influence of registries on the quality of care].

    Science.gov (United States)

    Stengel, D; Dreinhöfer, K; Kostuj, T

    2016-06-01

    Registries are a topic of lively debate amongst all stakeholders in healthcare, politics and economics. In general, registries are national or international (prospective) databases documenting the current state of diagnostic, therapeutic and long-term outcome variables of subjects with a distinct condition or health problem. The access to and handling of registry information is subject to strict legal, methodological and ethical principles and regulations before these data can be scientifically utilized and reentered into the routine daily practice. Because of the representativeness and reality of data, registries are widely regarded as the backbone of health systems and budgets.Currently there is only indirect evidence that registries influence outcomes and the quality of care. Recent statistical techniques may allow quasi-experimental modelling of observational information. In orthopedic and trauma surgery, current and upcoming registries should be wisely utilized to develop and evaluate innovations and to make informed decisions relevant to care. PMID:27164976

  17. The Danish Multiple Sclerosis Registry. History, data collection and validity

    DEFF Research Database (Denmark)

    Koch-Henriksen, N; Rasmussen, S; Stenager, E;

    2001-01-01

    The Danish Multiple Sclerosis Registry was formally established in 1956 but started operating in 1949 with a nationwide prevalence survey. Since then, the Registry has continued collecting data on new and old cases of multiple sclerosis (MS) or suspected MS from multiple sources. The Registry...... instrument for monitoring incidence and prevalence, analysing survival, performing genetic analysis, providing unselected patient samples for clinical analyses, performing case-control studies and prospective studies and estimating the need for treatment and care....

  18. Australia and New Zealand Dialysis and Transplant Registry

    OpenAIRE

    McDonald, Stephen P

    2015-01-01

    The ANZDATA Registry includes all patients treated with renal replacement therapy (RRT) throughout Australia and New Zealand. Funding is predominantly from government sources, together with the non-government organization Kidney Health Australia. Registry operations are overseen by an Executive committee, and a Steering Committee with wide representation. Data is collected from renal units throughout Australia and New Zealand on a regular basis, and forwarded to the Registry. Areas covered in...

  19. The International Takotsubo Registry: Rationale, Design, Objectives, and First Results.

    Science.gov (United States)

    Ghadri, Jelena-R; Cammann, Victoria L; Templin, Christian

    2016-10-01

    Takotsubo syndrome (TTS) was first described in Japan in 1990. The clinical presentation is similar to that of acute coronary syndrome (ACS). Cardiac enzymes are commonly elevated. A global initiative was launched and the InterTAK Registry was established to provide a systematic database. The major goals of the International Takotsubo Registry (InterTAK Registry) are to provide a comprehensive clinical characterization on natural history, treatment, and outcomes. We linked a biorepository to identify biomarkers for the diagnosis and prognosis and to investigate the genetic basis as well as disease-related factors. We focus on the rationale, objectives, design, and first results of the InterTAK Registry. PMID:27638029

  20. Risk of prostate, ovarian, and endometrial cancer among relatives of women with breast cancer.

    OpenAIRE

    Tulinius, H.; Egilsson, V.; Olafsdóttir, G. H.; Sigvaldason, H

    1992-01-01

    OBJECTIVE--To investigate the risk of prostate, ovarian, and endometrial cancer among relatives of patients with breast cancer. DESIGN--Cohort study of 947 pedigrees in which the proband had breast cancer, linked with the Icelandic cancer registry. SETTING--Iceland. SUBJECTS--The 947 pedigrees included 29,725 people, of whom 1539 had breast cancer, 467 had prostate cancer, 135 ovarian cancer, and 105 endometrial cancer. MAIN OUTCOME MEASURES--Risk of prostate, ovarian, and endometrial cancer ...

  1. 76 FR 36896 - Notice of Establishment of a New Plant Protection and Quarantine Stakeholder Registry

    Science.gov (United States)

    2011-06-23

    ... Protection and Quarantine Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA... of interest. FOR FURTHER INFORMATION CONTACT: For information on the PPQ Stakeholder Registry... Protection and Quarantine (PPQ) stakeholder registry is an email subscription service that allows...

  2. The growing number of hemophilia registries : Quantity vs. quality

    NARCIS (Netherlands)

    Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A

    2015-01-01

    Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an u

  3. Heredity In Sarcoidosis - A Registry-Based Twin Study

    DEFF Research Database (Denmark)

    Sverrild, Asger; Backer, Vibeke; Kyvik, Kirsten Ohm;

    2008-01-01

    obtained from the Danish National Patient Registry or the Social Insurance Institution, Finland, registry of re-imbursed medication using the 8th and 10th editions of the International Classification of Diseases. Fisher's exact test was used to compare probandwise concordance rates in different zygosity...

  4. The 2006 ERA-EDTA Registry annual report: a precis

    NARCIS (Netherlands)

    V.S. Stel; A. Kramer; C. Zoccali; K.J. Jager

    2009-01-01

    Introduction: This paper provides a summary of the 2006 European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry report. Methods: Data on renal replacement therapy (RRT) were available from 50 national and regional registries in 28 countries in Europe and bordering

  5. Data quality in the Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

    Ostgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Severinsen, Marianne Tang;

    2013-01-01

    The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data.......The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data....

  6. A Study on Risk Factors of Breast Cancer Among Patients Attending the Tertiary Care Hospital, in Udupi District

    OpenAIRE

    Ramchandra Kamath; Mahajan, Kamaleshwar S; Lena Ashok; Sanal, T S

    2013-01-01

    Background: Cancer has become one of the ten leading causes of death in India. Breast cancer is the most common diagnosed malignancy in India, it ranks second to cervical cancer. An increasing trend in incidence is reported from various registries of national cancer registry project and now India is a country with largest estimated number of breast cancer deaths worldwide. Aim: To study the factors associated with breast cancer. Objectives: To study the association between breast cancer and s...

  7. How Suitable Are Registry Data for Recurrence Risk Calculations?

    DEFF Research Database (Denmark)

    Ellesøe, Sabrina Gade; Jensen, Anders Boeck; Ängquist, Lars Henrik;

    2016-01-01

    BACKGROUND: Congenital heart disease (CHD) occurs in approximately 1% of all live births, and 3% to 8% of these have until now been considered familial cases, defined as the occurrence of two or more affected individuals in a family. The validity of CHD diagnoses in Danish administrative registry...... identifier in the Danish registries, thus enabling connection of information from several registries. Utilizing the CPR number, we identified Danish patients with familial CHD and reviewed each patient's file. We compared diagnoses from the registries with those manually assigned, which enabled calculation...... of nine of all cases with CHD are familial, and we also found that 36% of individuals with CHD in administrative medical registries are misclassified, which distort the RRR in simulated scenarios....

  8. Symptom Patterns Among Gulf War Registry Veterans

    Science.gov (United States)

    Hallman, William K.; Kipen, Howard M.; Diefenbach, Michael; Boyd, Kendal; Kang, Han; Leventhal, Howard; Wartenberg, Daniel

    2003-01-01

    Objectives. We identify symptom patterns among veterans who believe they suffer from Gulf War–related illnesses and characterize groups of individuals with similar patterns. Methods. A mail survey was completed by 1161 veterans drawn from the Gulf War Health Registry. Results. An exploratory factor analysis revealed 4 symptom factors. A K-means cluster analysis revealed 2 groups: (1) veterans reporting good health and few moderate/severe symptoms, and (2) veterans reporting fair/poor health and endorsing an average of 37 symptoms, 75% as moderate/severe. Those in Cluster 2 were more likely to report having 1 or more of 24 medical conditions. Conclusions. These findings are consistent with previous investigations of symptom patterns in Gulf War veterans. This multisymptom illness may be more fully characterized by the extent, breadth, and severity of symptoms reported. PMID:12660208

  9. I RBH - First Brazilian Hypertension Registry

    Science.gov (United States)

    Jardim, Paulo César Brandão Veiga; de Souza, Weimar Kunz Sebba Barroso; Lopes, Renato Delascio; Brandão, Andréa Araújo; Malachias, Marcus V. Bolívar; Gomes, Marco Mota; Moreno Júnior, Heitor; Barbosa, Eduardo Costa Duarte; Póvoa, Rui Manoel dos Santos

    2016-01-01

    Background: A registry assessing the care of hypertensive patients in daily clinical practice in public and private centers in various Brazilian regions has not been conducted to date. Such analysis is important to elucidate the effectiveness of this care. Objective: To document the current clinical practice for the treatment of hypertension with identification of the profile of requested tests, type of administered treatment, level of blood pressure (BP) control, and adherence to treatment. Methods: National, observational, prospective, and multicenter study that will include patients older than 18 years with hypertension for at least 4 weeks, following up in public and private centers and after signing a consent form. The study will exclude patients undergoing dialysis, hospitalized in the previous 30 days, with class III or IV heart failure, pregnant or nursing, with severe liver disease, stroke or acute myocardial infarction in the past 30 days, or with diseases with a survival prognosis < 1 year. Evaluations will be performed at baseline and after 1 year of follow-up. The parameters that will be evaluated include anthropometric data, lifestyle habits, BP levels, lipid profile, metabolic syndrome, and adherence to treatment. The primary outcomes will be hospitalization due to hypertensive crisis, cardiocirculatory events, and cardiovascular death, while secondary outcomes will be hospitalization for heart failure and requirement of dialysis. A subgroup analysis of 15% of the sample will include noninvasive central pressure evaluation at baseline and study end. The estimated sample size is 3,000 individuals for a prevalence of 5%, sample error of 2%, and 95% confidence interval. Results: The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. Conclusion: The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of modifying the prognosis of

  10. Glocal clinical registries: pacemaker registry design and implementation for global and local integration--methodology and case study.

    Directory of Open Access Journals (Sweden)

    Kátia Regina da Silva

    Full Text Available BACKGROUND: The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. PURPOSE: Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. METHODS AND RESULTS: We developed a device registry framework involving the following steps: (1 Data standards definition and representation of the research workflow, (2 Development of electronic case report forms using REDCap (Research Electronic Data Capture, (3 Data collection according to the clinical research workflow and, (4 Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5 Data quality control and (6 Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT we found 130 clinical trials which are potentially correlated with our pacemaker registry. CONCLUSION: This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re

  11. Paper 6: EUROCAT member registries: organization and activities

    DEFF Research Database (Denmark)

    Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude;

    2011-01-01

    EUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital...... anomalies covered by their region. Associate members transmit aggregate case counts for each EUROCAT anomaly subgroup by year and by type of birth. This article describes the organization and activities of each of the current 29 full member and 6 associate member registries of EUROCAT....

  12. EPA Facility Registry Service (FRS): CERCLIS_NPL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...

  13. EPA Facility Registry Service (FRS): ER_TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  14. EPA Facility Registry Service (FRS): ER_WWTP_NPDES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of Waste Water Treatment...

  15. EPA Facility Registry Service (FRS): ER_RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  16. EPA Facility Registry Service (FRS): PCS_NPDES_MAJOR

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...

  17. EPA Facility Registry Service (FRS): Wastewater Treatment Plants

    Data.gov (United States)

    U.S. Environmental Protection Agency — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS), EPA's Integrated Compliance Information System (ICIS)...

  18. EPA Facility Registry Service (FRS): RCRA_TRANS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  19. Clinical features of paediatric pulmonary hypertension : a registry study

    NARCIS (Netherlands)

    Berger, Rolf M. F.; Beghetti, Maurice; Humpl, Tilman; Raskob, Gary E.; Ivy, D. Dunbar; Jing, Zhi-Cheng; Bonnet, Damien; Schulze-Neick, Ingram; Barst, Robyn J.

    2012-01-01

    Background Paediatric pulmonary hypertension, is an important cause of morbidity and mortality, and is insufficiently characterised in children. The Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension (TOPP) registry is a global, prospective study designed to provide information about

  20. EPA Facility Registry Service (FRS): AIRS_AQS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  1. EPA Facility Registry Service (FRS): AIRS_AFS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  2. EPA Facility Registry Service (FRS): ER_RCRATSD

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  3. EPA Facility Registry Service (FRS): PCS_NPDES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  4. EPA Facility Registry Service (FRS): ER_FRP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to Facility...

  5. EPA Facility Registry Service (FRS): RCRA_LQG

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  6. Holt Oram syndrome: a registry-based study in Europe

    DEFF Research Database (Denmark)

    Barisic, Ingeborg; Boban, Ljubica; Greenlees, Ruth;

    2014-01-01

    BACKGROUND: Holt-Oram syndrome (HOS) is an autosomal dominant disorder characterised by upper limb anomalies and congenital heart defects. We present epidemiological and clinical aspects of HOS patients using data from EUROCAT (European Surveillance of Congenital Anomalies) registries. METHODS...

  7. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  8. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  9. EPA Facility Registry Service (FRS): Facility Interests Dataset Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  10. EPA Facility Registry Service (FRS): Facility Interests Dataset

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  11. Environmental Protection Agency (EPA) Facility Registry Service (FRS) Power Plants

    Data.gov (United States)

    Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...

  12. EPA Facility Registry Service (FRS): ALL FRS INTERESTS LAYER

    Data.gov (United States)

    U.S. Environmental Protection Agency — This data provides location and attribute information on all facilities in EPA's Facility Registry Service (FRS) for a internet web feature service . The FRS is an...

  13. EPA Facility Registry Service (FRS): RCRA_TSD

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of Hazardous Waste...

  14. EPA Facility Registry Service (FRS): ER_TSCA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  15. EPA Facility Registry Service (FRS): AIRS_AFS_MAJOR

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  16. EPA Facility Registry Service (FRS): ER_CERCLIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  17. EPA Facility Registry Service (FRS): ER_EPLAN

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  18. EPA Facility Registry Service (FRS): RCRA_ACTIVE

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of active hazardous...

  19. EPA Facility Registry Service (FRS): RCRA_INACTIVE

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  20. Introduction to the 2006 UK Renal Registry report (chapter 2).

    Science.gov (United States)

    Ansell, David; Will, Es; Tomson, Charlie

    2007-08-01

    The UK Renal Registry is part of the UK Renal Association and provides independent audit and analysis of renal replacement therapy in the UK. The Registry is funded directly by participating renal units through an annual fee per patient registered. The Registry is now collecting data on incidence and prevalence from 100% of UK renal units, with the five remaining non-linked sites in England providing summary data. Maintaining and enhancing Registry functionality will be an important touchstone for the Connecting for Health initiative. Collaboration with other formal agencies also promises an exciting prospect for future development. After a long proving period, the means, methods and roles have come together to complete an effective adjunct to clinical activity, planning, research and the performance of the renal community.

  1. The National Anesthesia Clinical Outcomes Registry.

    Science.gov (United States)

    Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P

    2015-12-01

    The Anesthesia Quality Institute (AQI) was chartered in 2008 by the American Society of Anesthesiologists to develop the National Anesthesia Clinical Outcomes Registry (NACOR). In this Technical Communication, we will describe how data enter NACOR, how they are authenticated, and how they are analyzed and reported. NACOR accepts case-level administrative, clinical, and quality capture data from voluntarily participating anesthesia practices and health care facilities in the United States. All data are transmitted to the AQI in summary electronic files generated by billing, quality capture, and electronic health care record software, typically on a monthly basis. All data elements are mapped to fields in the NACOR schema in accordance with a publicly available data dictionary. Incoming data are loaded into NACOR by AQI technologists and are subject to both manual and automated review to identify systematically missing elements, miscoding, and inadvertent corruption. Data are deidentified in compliance with Health Insurance Portability and Accountability Act regulations. The database server of AQI, which houses the NACOR database, is protected by 2 firewalls within the American Society of Anesthesiologists' network infrastructure; this system has not been breached. The NACOR Participant User File, a deidentified case-level dataset of information from NACOR, is available to researchers at participating institutions. NACOR architecture and the nature of the Participant User File include both strengths and weaknesses. PMID:26579661

  2. Italian registry of cardiac magnetic resonance

    Energy Technology Data Exchange (ETDEWEB)

    Francone, Marco [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Di Cesare, Ernesto, E-mail: ernesto.dicesare@cc.univaq.it [Dipartimento di Scienze Cliniche Applicate e Biotecnologie, Università di L’Aquila (Italy); Cademartiri, Filippo [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pontone, Gianluca [IRCCS Centro Cardiologico Monzino (Italy); Lovato, Luigi [Policlinico S. Orsola Bologna (Italy); Matta, Gildo [Azienda ospedaliera G Brotzu Cagliari (Italy); Secchi, Francesco [IRCCS Policlinico San Donato, Radiology Unit, Milan (Italy); Maffei, Erica [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pradella, Silvia [Azienda Ospedaliera Universitaria Careggi (Italy); Carbone, Iacopo [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Marano, Riccardo [Policlinico Gemelli, Università Cattolica Roma (Italy); Bacigalupo, Lorenzo [Ospedale Galliera, Genova (Italy); Chiodi, Elisabetta [Ospedale S. Anna Ferrara (Italy); Donato, Rocco [Azienda Ospedaliera Universitaria G. Martino, Me (Italy); Sbarbati, Stefano [Ospedale Madre Giuseppina Vannini, Roma (Italy); De Cobelli, Francesco [IRCCS S. Raffaele, Università Vita Salute, Milano (Italy); Di Renzi, Paolo [Fate Bene Fratelli Isola tiberina, Roma (Italy); Ligabue, Guido; Mancini, Andrea [Azienda Ospedaliera-Universitaria Policlinico di Modena (Italy); Palmieri, Francesco [Diparimento di Diagnostica per immagini e radiologia interventistica, Ospedale S. Maria delle Grazie, Pozzuoli, Napoli (Italy); and others

    2014-01-15

    Objectives: Forty sites were involved in this multicenter and multivendor registry, which sought to evaluate indications, spectrum of protocols, impact on clinical decision making and safety profile of cardiac magnetic resonance (CMR). Materials and methods: Data were prospectively collected on a 6-month period and included 3376 patients (47.2 ± 19 years; range 1–92 years). Recruited centers were asked to complete a preliminary general report followed by a single form/patient. Referral physicians were not required to exhibit any specific certificate of competency in CMR imaging. Results: Exams were performed with 1.5 T scanners in 96% of cases followed by 3 T (3%) and 1 T (1%) magnets and contrast was administered in 84% of cases. The majority of cases were performed for the workup of inflammatory heart disease/cardiomyopathies representing overall 55.7% of exams followed by the assessment of myocardial viability and acute infarction (respectively 6.9% and 5.9% of patients). In 49% of cases the final diagnosis provided was considered relevant and with impact on patient's clinical/therapeutic management. Safety evaluation revealed 30 (0.88%) clinical events, most of which due to patient's preexisting conditions. Radiological reporting was recorded in 73% of exams. Conclusions: CMR is performed in a large number of centers in Italy with relevant impact on clinical decision making and high safety profile.

  3. The National Anesthesia Clinical Outcomes Registry.

    Science.gov (United States)

    Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P

    2015-12-01

    The Anesthesia Quality Institute (AQI) was chartered in 2008 by the American Society of Anesthesiologists to develop the National Anesthesia Clinical Outcomes Registry (NACOR). In this Technical Communication, we will describe how data enter NACOR, how they are authenticated, and how they are analyzed and reported. NACOR accepts case-level administrative, clinical, and quality capture data from voluntarily participating anesthesia practices and health care facilities in the United States. All data are transmitted to the AQI in summary electronic files generated by billing, quality capture, and electronic health care record software, typically on a monthly basis. All data elements are mapped to fields in the NACOR schema in accordance with a publicly available data dictionary. Incoming data are loaded into NACOR by AQI technologists and are subject to both manual and automated review to identify systematically missing elements, miscoding, and inadvertent corruption. Data are deidentified in compliance with Health Insurance Portability and Accountability Act regulations. The database server of AQI, which houses the NACOR database, is protected by 2 firewalls within the American Society of Anesthesiologists' network infrastructure; this system has not been breached. The NACOR Participant User File, a deidentified case-level dataset of information from NACOR, is available to researchers at participating institutions. NACOR architecture and the nature of the Participant User File include both strengths and weaknesses.

  4. The growing number of hemophilia registries: Quantity vs. quality.

    Science.gov (United States)

    Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A

    2015-05-01

    Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required. PMID:25669198

  5. The Entity Registry System. From concept to deployment

    OpenAIRE

    Gramada, Mihai

    2016-01-01

    The entity registry system (ERS) is a decentralized entity registry that can be used to replace the Web as a platform for publishing linked data when the latter is not available. In developing countries, where off-line is the default mode of operation, centralized linked data solutions fail to address the needs of the communities. Although the features are mostly completed, the system is not yet ready for deployment. This project aims to provide extensive tests and scalability investigations ...

  6. BioSWR – Semantic Web Services Registry for Bioinformatics

    OpenAIRE

    Dmitry Repchevsky; Josep Ll Gelpi

    2014-01-01

    Article About the Authors Metrics Comments Related Content Abstract Introduction Functionality Implementation Discussion Acknowledgments Author Contributions References Reader Comments (0) Figures Abstract Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to...

  7. The Relative Contribution of Genetic and Environmental Factors to Cancer Risk and Cancer Mortality in Norway

    OpenAIRE

    Leuven, Edwin; Plug, Erik; Rønning, Marte

    2014-01-01

    Using Norwegian cancer registry data we study twin and non-twin siblings to decompose variation in cancer at most common sites and cancer mortality into a genetic, shared environment and individual (unshared environmental) component. Regardless the source of sibling variation, our findings indicate that genes dominate over shared environment in explaining relatively more of the variation in cancer at most common cancer sites (but lung and skin cancer) and cancer mortality. The vast majority o...

  8. Cancer in first-degree relatives and risk of testicular cancer in Denmark

    OpenAIRE

    Nordsborg, Rikke Baastrup; Meliker, Jaymie R.; Wohlfahrt, Jan; Melbye, Mads; Raaschou-Nielsen, Ole

    2011-01-01

    Familial aggregation of testicular cancer has been reported consistently, but it is less clear if there is any association between risk of testicular cancer and other cancers in the family. We conducted a population based case-control study to examine the relationship between risk of testicular cancer and 22 different cancers in first-degree relatives. We included 3297 cases of testicular cancer notified to the Danish Cancer Registry between 1991 and 2003. 6594 matched controls were selected ...

  9. Role of comorbidity on survival after radiotherapy and chemotherapy for nonsurgically treated lung cancer

    DEFF Research Database (Denmark)

    Mellemgaard, Anders; Lüchtenborg, Margreet; Iachina, Maria;

    2015-01-01

    between tobacco smoking and lung cancer, and because lung cancer is often diagnosed in advanced ages (median age at diagnosis in Denmark is 70 years), comorbidity is present in a large proportion of lung cancer patients. METHODS: Patients with any stage lung cancer who did not have surgical treatment were......BACKGROUND: Comorbidity, such as diseases of the cardiovascular, pulmonary, and other systems, may influence prognosis in lung cancer and complicate its treatment. The performance status of patients, which is a known prognostic marker, may also be influenced by comorbidity. Due to the close link...... identified in the Danish Lung Cancer Registry. Danish Lung Cancer Registry collects data from clinical departments, the Danish Cancer Registry, Danish National Patient Registry, and the Central Population Register. A total of 20,552 patients diagnosed with lung cancer in 2005 to 2011 were identified...

  10. Gynecological cancer in Indonesia

    OpenAIRE

    Aziz, M. Farid

    2009-01-01

    To overview the status of gynecologic cancer in Indonesia. Information regarding Indonesia obtained from World Bank Report and Statistical Yearbook of Indonesia 2007, epidemiological data obtained from Histopathological Data of Cancer in Indonesia 2002, Department of Health-Registry Body of Indonesian Specialist of Pathology Association-Indonesian Cancer Society; Various Hospitals in big Cities in Indonesia. Indonesia is an Archipelago with a total area of 1,922,570.00 km2, the population is ...

  11. Lokaliseret cancer prostatae. Overlevelse og tab af leveår

    DEFF Research Database (Denmark)

    Brasso, Klaus; Friis, S; Juel, K;

    1998-01-01

    Computerized linkage between the Danish Cancer Registry and the Central Personal Registry was established. A total of 1459 men aged 55-74 years with newly diagnosed clinically localized prostate cancer in the period 1983-1987 were identified. Routine treatment in this period was observation and e...

  12. Trends in prostate cancer in elderly in Denmark, 1980-2012

    DEFF Research Database (Denmark)

    Poulsen, Mads Hvid; Dysager, Lars; Gerke, Oke;

    2016-01-01

    from the NORDCAN database with comparable data on cancer incidence, mortality, prevalence and relative survival in the Nordic countries, where the Danish data are delivered from the Danish Cancer Registry and the Danish Cause of Death Registry. Results The average annual number of newly diagnosed...

  13. Peritoneal Dialysis Registry With 2012 Survey Report.

    Science.gov (United States)

    Hasegawa, Takeshi; Nakai, Shigeru; Moriishi, Misaki; Ito, Yasuhiko; Itami, Noritomo; Masakane, Ikuto; Hanafusa, Norio; Taniguchi, Masatomo; Hamano, Takayuki; Shoji, Tetsuo; Yamagata, Kunihiro; Shinoda, Toshio; Kazama, Junichiro; Watanabe, Yuzo; Shigematsu, Takashi; Marubayashi, Seiji; Morita, Osamu; Wada, Atsushi; Hashimoto, Seiji; Suzuki, Kazuyuki; Kimata, Naoki; Wakai, Kenji; Fujii, Naohiko; Ogata, Satoshi; Tsuchida, Kenji; Nishi, Hiroshi; Iseki, Kunitoshi; Tsubakihara, Yoshiharu; Nakamoto, Hidetomo

    2015-12-01

    Since 2009, the peritoneal dialysis (PD) registry survey has been carried out as part of the annual nationwide survey conducted by the Statistical Survey Committee of the Japanese Society for Dialysis Therapy with the cooperation of the Japanese Society for Peritoneal Dialysis. In this report, the current status of PD patients is presented on the basis of the results of the survey conducted at the end of 2012. The subjects were PD patients who lived in Japan and participated in the 2012 survey. Descriptive analysis of various items was performed, which included the current status of the combined use of PD and another dialysis method such as hemodialysis (HD) or hemodiafiltration (HDF), the method of exchanging dialysate, the use of an automated peritoneal dialysis (APD) machine, and the rates of peritonitis and catheter exit-site infection. From the results of the facility survey in 2012, the number of PD patients was 9514, a decrease of 128 from 2011. Among the entire dialysis patient population, 3.1% were PD patients, a decrease of 0.1%. Among the studied patients, 347 had a peritoneal catheter and underwent peritoneal lavage, 175 were started on PD in 2012 but introduced to other blood purification methods in the same year, and 1932 underwent both PD and another dialysis method such as HD or HDF. The percentage of patients who underwent PD and another dialysis method increased with PD vintage: vintage of ≥2 years. The mean rate of peritonitis was 0.22 per patient per year. The mean rate of catheter exit-site infections was 0.36 per patient per year.

  14. Establishment of an Australian National Genetic Heart Disease Registry.

    Science.gov (United States)

    Ingles, Jodie; McGaughran, Julie; Vohra, Jitendra; Weintraub, Robert G; Davis, Andrew; Atherton, John; Semsarian, Christopher

    2008-12-01

    A National Genetic Heart Disease Registry has recently been established, with the aim to enroll every family in Australia with a genetically determined cardiomyopathy or primary arrhythmic disorder. The Registry seeks to further our understanding of the impact and burden of disease in this population; increase awareness and provide education to health professionals and families; and establish a large cardiac genetic cohort as a resource for approved research studies. The Registry is currently recruiting families with inherited cardiomyopathies (e.g. hypertrophic cardiomyopathy) and primary arrhythmogenic disorders (e.g. long QT syndrome), with scope to expand this in the future. Affected individuals, as well as their first-degree (at-risk) family members are eligible to enroll. Participants are currently being recruited from cardiac genetics clinics in approved recruitment sites and hope to expand to other Australian centres including general cardiology practice in the future. A significant focus of the Registry is to improve understanding and create awareness of inherited heart diseases, which includes ensuring families are aware of genetic testing options and current clinical screening recommendations for at-risk family members. A Registry Advisory Committee has been established under the NHMRC Guidelines, and includes a representative from each major recruitment centre. This committee approves all decisions relating to the Registry including approval of research studies. A National Genetic Heart Disease Registry will provide a valuable resource to further our knowledge of the clinical and genetic aspects of these diseases. Since most of the current data about the prevalence, natural history and outcomes of genetic heart diseases has emanated from the United States and Europe, characterising these Australian populations will be of significant benefit, allowing for more informed and specific health care planning and resource provision.

  15. Japan Renal Biopsy Registry and Japan Kidney Disease Registry: Committee Report for 2009 and 2010.

    Science.gov (United States)

    Sugiyama, Hitoshi; Yokoyama, Hitoshi; Sato, Hiroshi; Saito, Takao; Kohda, Yukimasa; Nishi, Shinichi; Tsuruya, Kazuhiko; Kiyomoto, Hideyasu; Iida, Hiroyuki; Sasaki, Tamaki; Higuchi, Makoto; Hattori, Motoshi; Oka, Kazumasa; Kagami, Shoji; Kawamura, Tetsuya; Takeda, Tetsuro; Hataya, Hiroshi; Fukasawa, Yuichiro; Fukatsu, Atsushi; Morozumi, Kunio; Yoshikawa, Norishige; Shimizu, Akira; Kitamura, Hiroshi; Yuzawa, Yukio; Matsuo, Seiichi; Kiyohara, Yutaka; Joh, Kensuke; Nagata, Michio; Taguchi, Takashi; Makino, Hirofumi

    2013-04-01

    The Japan Renal Biopsy Registry (J-RBR) was started in 2007 and the Japan Kidney Disease Registry (J-KDR) was then started in 2009 by the Committee for Standardization of Renal Pathological Diagnosis and the Committee for the Kidney Disease Registry of the Japanese Society of Nephrology. The purpose of this report is to describe and summarize the registered data from 2009 and 2010. For the J-KDR, data were collected from 4,016 cases, including 3,336 (83.1 %) by the J-RBR and 680 (16.9 %) other cases from 59 centers in 2009, and from 4,681 cases including 4,106 J-RBR cases (87.7 %) and 575 other cases (12.3 %) from 94 centers in 2010, including the affiliate hospitals. In the J-RBR, 3,165 native kidneys (94.9 %) and 171 renal grafts (5.1 %) and 3,869 native kidneys (94.2 %) and 237 renal grafts (5.8 %) were registered in 2009 and 2010, respectively. Patients younger than 20 years of age comprised 12.1 % of the registered cases, and those 65 years and over comprised 24.5 % of the cases with native kidneys in 2009 and 2010. The most common clinical diagnosis was chronic nephritic syndrome (55.4 % and 50.0 % in 2009 and 2010, respectively), followed by nephrotic syndrome (22.4 % and 27.0 %); the most frequent pathological diagnosis as classified by the pathogenesis was IgA nephropathy (31.6 % and 30.4 %), followed by primary glomerular diseases (except IgA nephropathy) (27.2 % and 28.1 %). Among the primary glomerular diseases (except IgA nephropathy) in the patients with nephrotic syndrome, membranous nephropathy was the most common histopathology in 2009 (40.3 %) and minor glomerular abnormalities (50.0 %) were the most common in 2010 in native kidneys in the J-RBR. Five new secondary and longitudinal research studies by the J-KDR were started in 2009 and one was started in 2010.

  16. Choropleth Map Design for Cancer Incidence, Part 2

    Directory of Open Access Journals (Sweden)

    Thomas B. Richards, MD

    2010-01-01

    Full Text Available Choropleth maps are commonly used in cancer reports and community discussions about cancer rates. Cancer registries increasingly use geographic information system techniques. The Centers for Disease Control and Prevention’s Division of Cancer Prevention and Control convened a Map Work Group to help guide application of geographic information system mapping techniques and to promote choropleth mapping of data from central cancer registries supported by the National Program of Cancer Registries, especially for comprehensive cancer control planning and evaluation purposes. In this 2-part series, we answer frequently asked questions about choropleth map design to display cancer incidence data. We recommend that future initiatives consider more advanced mapping, spatial analysis, and spatial statistics techniques and include usability testing with representatives of state and local programs and other cancer prevention partners.

  17. Choropleth Map Design for Cancer Incidence, Part 1

    Directory of Open Access Journals (Sweden)

    Thomas B. Richards, MD

    2010-01-01

    Full Text Available Choropleth maps are commonly used in cancer reports and community discussions about cancer rates. Cancer registries increasingly use geographic information system techniques. The Centers for Disease Control and Prevention’s Division of Cancer Prevention and Control convened a Map Work Group to help guide application of geographic information systems mapping techniques and to promote choropleth mapping of data from central cancer registries supported by the National Program of Cancer Registries, especially for planning and evaluation of comprehensive cancer control programs. In this 2-part series in this issue of Preventing Chronic Disease, we answer frequently asked questions about choropleth map design to display cancer incidence data. We recommend that future initiatives consider more advanced mapping, spatial analysis, and spatial statistics techniques, and include usability testing with representatives of state and local programs and other cancer prevention partners.

  18. Cancer prostatae hos maend under 65 år. Forekomst og behov for udredning

    DEFF Research Database (Denmark)

    Brasso, K; Friis, S; Kjaer, S K;

    1997-01-01

    Based on information from the nationwide Danish Cancer Registry, the development in prostate cancer incidence among Danish men under 65 years is reviewed. Changes in incidence rate, clinical stage and the number of possible candidates for radical treatment are discussed....

  19. European operative registry to avoid complications in operative gynecology.

    Science.gov (United States)

    Putz, Andreas; Bohlin, Tonje; Rakovan, Martin; Putz, Ariane Maria; De Wilde, Rudy Leon

    2016-08-01

    The aim of this study is to determine how complications can be avoided in gynecological minimally invasive surgery in Europe. The Norwegian Gynecological Endoscopic Registry (NGER) facilitates medical research over a long duration. Can experiences from the Norwegian registry be used to develop a European registry to avoid complications? To answer this question, we used the NGER data from February 2013 until March 2015 to analyze the complications of gynecological endoscopy. The registry includes sociodemographic factors, related comorbidity, previous surgery, present procedure, and intraoperative complications. Postoperative complications were identified with a questionnaire administered 4 weeks after surgery. The risk factors leading to complications in gynecological endoscopy were found to be obesity, diabetes mellitus, heart disease, hypertension, previous surgery due to cervical carcinoma in situ, and low educational level. Regional differences in the complication rate were noted. National web-based operation registries such as the NGER can identify the risk factors for complications of gynecological endoscopic surgery and can help improve the outcome after surgery. The experience from NGER can be used to establish a European register. PMID:26805611

  20. OCLC Registry of Digital Masters – Opportunities for European Cooperation

    Directory of Open Access Journals (Sweden)

    Janet Lees

    2005-11-01

    Full Text Available I would like to thank the Preservation Division for the invitation to participate in the programme today. I would also like to thank the LIBER Board for their interest in the early stages of this project culminating in the announcement LIBER President Erland Kolding Nielsen made last night about LIBER support and collaboration with OCLC PICA with respect to the Digital Registry. This initiative reflects my new role within OCLC PICA, which is to identify opportunities for joint development with our major shareholder OCLC, and sometimes 3rd parties such as LIBER. My main purpose today is to provide a descriptive paper to inform LIBER members about the OCLC Digital Registry and to outline the possible role for LIBER and its membership in a model for European participation. My presentation will be in three phases: the need for a registry, a description of the Registry and finally, and perhaps most importantly, to outline opportunities for LIBER and its members in establishing a model for European contribution. We are all familiar with the concept of a registry through our participation in union catalogues and perhaps also from our experience with microfilms through the European Register of Microform Masters (EROMM hosted by our friends in Göttingen.

  1. Burden and Chemoprevention of Skin Cancer

    NARCIS (Netherlands)

    L.M. Hollestein (Loes)

    2013-01-01

    markdownabstract__Abstract__ The incidence of skin cancer is increasing in the Netherlands since 1989, the first year of the Netherlands Cancer Registry (NCR). In 2010 more than 43,000 patients were newly diagnosed with skin cancer in the Netherlands. During a life time at least 1 in 5 persons livi

  2. Evaluation of gemtuzumab ozogamycin associated sinusoidal obstructive syndrome: Findings from an academic pharmacovigilance program review and a pharmaceutical sponsored registry

    Science.gov (United States)

    Magwood-Golston, Jametta S.; Kessler, Samuel; Bennett, Charles L.

    2016-01-01

    Background In 2000, the Food and Drug Administration (FDA) approved gemtuzumab ozogamycin for monotherapy for older patients with relapsed AML. A 0.9% rate of hepatic sinusoidal obstructive syndrome (SOS) was noted in licensing trials. In 2001, FDA received reports of 14 GO-associated SOS cases from MD Anderson Cancer Center. A State of South Carolina/National Cancer Institute funded pharmacovigilance program and a manufacturer sponsored registry independently evaluated this concern. Methods The manufacturer’s registry and the academic program focused on risk factors and incidence of GO-associated SOS in routine clinical practice and clinical trial settings, respectively. Comparisons were made of findings and dissemination efforts from the two studies. Results Retrospective analysis of clinical trials by the academic initiative identified 99 cases of SOS among 221 GO-treated stem cell patients and 649 patients who did not undergo HSCTs. SOS rates were 3% when GO was administered at doses ≤6 mg/m2 as monotherapy or with non-hepatotoxic agents; 28% when administered with 6-thioguanine, a hepatotoxic agent; 15% when administered as monotherapy at doses at a dose of 9 mg/m2, and between 15% and 40% if a stem cell transplant (SCT) was performed within 3 months of GO administration. Death from SOS occurred in 33% of the cases. The manufacturer’s registry prospectively evaluated 482 GO-treated patients who received a mean dose of 7.8 mg/m2. Overall, 41% received concomitant chemotherapy, 18% had undergone prior SCT, 9.1% developed SOS, and death from SOS occurred in 60% of the SOS cases. Findings from each initiative were disseminated at national conferences and in peer-reviewed manuscripts beginning in 2003. Conclusion Retrospective review of clinical trials, case series, and FDA reports and prospective registries can provide important information on safety signals initially identified in licensing trials. PMID:27030962

  3. REAC/TS Radiation Accident Registry: An Overview

    Energy Technology Data Exchange (ETDEWEB)

    Doran M. Christensen, DO, REAC/TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician

    2012-12-12

    Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater share of deaths has occurred in medical settings.

  4. Opioids and breast cancer recurrence

    DEFF Research Database (Denmark)

    Cronin-Fenton, Deirdre P; Heide-Jørgensen, Uffe; Ahern, Thomas P;

    2015-01-01

    BACKGROUND: Opioids may alter immune function, thereby potentially affecting cancer recurrence. The authors investigated the association between postdiagnosis opioid use and breast cancer recurrence. METHODS: Patients with incident, early stage breast cancer who were diagnosed during 1996 through...... 2008 in Denmark were identified from the Danish Breast Cancer Cooperative Group Registry. Opioid prescriptions were ascertained from the Danish National Prescription Registry. Follow-up began on the date of primary surgery for breast cancer and continued until breast cancer recurrence, death......, emigration, 10 years, or July 31, 2013, whichever occurred first. Cox regression models were used to compute hazard ratios and 95% confidence intervals associating breast cancer recurrence with opioid prescription use overall and by opioid type and strength, immunosuppressive effect, chronic use (≥6 months...

  5. Patient-reported outcome measures in arthroplasty registries.

    Science.gov (United States)

    Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric; Lübbeke, Anne; Denissen, Geke; Dunn, Jennifer; Lyman, Stephen; Franklin, Patricia; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Dawson, Jill

    2016-07-01

    The International Society of Arthroplasty Registries (ISAR) Steering Committee established the Patient-Reported Outcome Measures (PROMs) Working Group to convene, evaluate, and advise on best practices in the selection, administration, and interpretation of PROMs and to support the adoption and use of PROMs for hip and knee arthroplasty in registries worldwide. The 2 main types of PROMs include generic (general health) PROMs, which provide a measure of general health for any health state, and specific PROMs, which focus on specific symptoms, diseases, organs, body regions, or body functions. The establishment of a PROM instrument requires the fulfillment of methodological standards and rigorous testing to ensure that it is valid, reliable, responsive, and acceptable to the intended population. A survey of the 41 ISAR member registries showed that 8 registries administered a PROMs program that covered all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health survey (SF-12) or the similar Veterans RAND 12-item health survey (VR-12). The most common specific PROMs were the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee injury and Osteoarthritis Outcome Score (KOOS), the Oxford Hip Score (OHS), the Oxford Knee Score (OKS), the Western Ontario and McMaster Universities Arthritis Index (WOMAC), and the University of California at Los Angeles Activity Score (UCLA). PMID:27168175

  6. Creating an effective clinical registry for rare diseases.

    Science.gov (United States)

    D'Agnolo, Hedwig Ma; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner; Drenth, Joost Ph

    2016-06-01

    The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well.

  7. CMS Run Registry: Data Certification Bookkeeping and Publication System

    Science.gov (United States)

    Rapsevicius, V.; CMS DQM Group

    2011-12-01

    The Run Registry of the CMS experiment at the LHC is the central tool for the tracking of the data quality monitoring and data certification workflows and the bookkeeping of the results. It consists of a Java web application frontend which connects to an Oracle database in the backend. The current production version 2 of the Run Registry application, was deployed in the beginning of the year 2010, before the LHC data taking started, and has since then undergone a number of full release cycles. In this note we describe the architecture and the experiences from the first year of datataking.

  8. Initial experiences of a multicenter transluminal revascularization registry

    International Nuclear Information System (INIS)

    This paper establishes a multicenter registry for collection and analysis of data from a large series of patients undergoing percutaneous transluminal revascularization of peripheral vascular lesions. The registry began as a joint collaboration between the radiology departments of Thomas Jefferson University Hospital and the University of Pennsylvania, through the Philadelphia Society of Angiography/Interventional Radiology. The American College of Radiology research office in Philadelphia is used as the data collection center. A detailed data form has been developed. It includes information about patient history, procedure indications, lesion location and morphology, techniques used, immediate angiographic and clinical outcome, and clinical follow-up at intervals up to 5 years

  9. Service Registry: A Key Piece for Enhancing Reuse in SOA

    Directory of Open Access Journals (Sweden)

    Juan Pablo García-González

    2013-01-01

    Full Text Available One of the promises of adopting a service-oriented approach in organizations is the potential cost savings that result from the reuse of existing services. A service registry is one of the fundamental pieces of service oriented architecture (SOA for achieving reuse. It refers to a place in which service providers can impart information about their offered services and potential clients can search for services. In this article, we provide advice for implementing an enterprise-wide service registry. We also discuss open issues in industry and academia that affect the management of service- repository information.

  10. DANBIO: a nationwide registry of biological therapies in Denmark.

    Science.gov (United States)

    Hetland, M L

    2005-01-01

    Since the year 2000, Danish rheumatologists have been collecting data on a routine basis in the nationwide DANBIO registry, which includes all rheumatologic patients receiving biological drugs. Demographic data, markers of disease activity, current treatment, serious and non-serious adverse events and reasons for discontinuation are registered at each visit either on paper forms or on-line. By June 2005, approximately 3000 treatment courses (18,000 visits) were in the registry, corresponding to close to 90% of eligible patients. Rheumatoid arthritis was the most prevalent diagnosis (75%) followed by ankylosing spondylitis (11%) and psoriatic arthritis (7%). Infections occurred in 43% of the treatment series. PMID:16273809

  11. Using registries to identify type 2 diabetes patients

    Directory of Open Access Journals (Sweden)

    Thomsen RW

    2014-12-01

    Full Text Available Reimar W Thomsen, Henrik Toft Sørensen Department of Clinical Epidemiology, Aarhus University Hospital, DenmarkValidation studies of health care registries are considered boring by some. An epidemiologist recently conducted a validation study based on the Danish National Registry of Patients and received the following unflattering comment from a reviewer: “A good example of a paper of limited scope that probably would only be published electronically where space is unlimited”. We do not subscribe to this point of view. See Original Research article

  12. Regulatory insight into the European human pluripotent stem cell registry.

    Science.gov (United States)

    Kurtz, Andreas; Stacey, Glyn; Kidane, Luam; Seriola, Anna; Stachelscheid, Harald; Veiga, Anna

    2014-12-01

    The European pluripotent stem cell registry aims at listing qualified pluripotent stem cell (PSC) lines that are available globally together with relevant information for each cell line. Specific emphasis is being put on documenting ethical procurement of the cells and providing evidence of pluripotency. The report discusses the tasks and challenges for a global PSC registry as an instrument to develop collaboration, to access cells from diverse resources and banks, and to implement standards, and as a means to follow up usage of cells and support adherence to regulatory and scientific standards and transparency for stakeholders. PMID:25457963

  13. IVOA Recommendation: Registry Relational Schema Version 1.0

    CERN Document Server

    Demleitner, Markus; Molinaro, Marco; Greene, Gretchen; Dower, Theresa; Perdikeas, Menelaos

    2015-01-01

    Registries provide a mechanism with which VO applications can discover and select resources - first and foremost data and services - that are relevant for a particular scientific problem. This specification defines an interface for searching this resource metadata based on the IVOA's TAP protocol. It specifies a set of tables that comprise a useful subset of the information contained in the registry records, as well as the table's data content in terms of the XML VOResource data model. The general design of the system is geared towards allowing easy authoring of queries.

  14. Viral hepatitis and liver cancer on the Island of Guam.

    Science.gov (United States)

    Haddock, R L; Paulino, Y C; Bordallo, R

    2013-01-01

    Patient records from the Guam Cancer Registry were compared with patients listed in a health department viral hepatitis case registry and the numbers of liver cancer and viral hepatitis cases were compared by ethnicity. Hepatitis C was the form of viral hepatitis most common among liver cancer cases on Guam (63.3% of viral hepatitis-associated liver cancer cases). Since viral hepatitis is an important cause of liver cancer, studies such as the present one may provide the information necessary to establish programs (screening of populations at risk and infant vaccination in the case of hepatitis B, for example) that may lessen the impact of liver cancer in the future.

  15. Cancer statistics in China, 2015.

    Science.gov (United States)

    Chen, Wanqing; Zheng, Rongshou; Baade, Peter D; Zhang, Siwei; Zeng, Hongmei; Bray, Freddie; Jemal, Ahmedin; Yu, Xue Qin; He, Jie

    2016-01-01

    With increasing incidence and mortality, cancer is the leading cause of death in China and is a major public health problem. Because of China's massive population (1.37 billion), previous national incidence and mortality estimates have been limited to small samples of the population using data from the 1990s or based on a specific year. With high-quality data from an additional number of population-based registries now available through the National Central Cancer Registry of China, the authors analyzed data from 72 local, population-based cancer registries (2009-2011), representing 6.5% of the population, to estimate the number of new cases and cancer deaths for 2015. Data from 22 registries were used for trend analyses (2000-2011). The results indicated that an estimated 4292,000 new cancer cases and 2814,000 cancer deaths would occur in China in 2015, with lung cancer being the most common incident cancer and the leading cause of cancer death. Stomach, esophageal, and liver cancers were also commonly diagnosed and were identified as leading causes of cancer death. Residents of rural areas had significantly higher age-standardized (Segi population) incidence and mortality rates for all cancers combined than urban residents (213.6 per 100,000 vs 191.5 per 100,000 for incidence; 149.0 per 100,000 vs 109.5 per 100,000 for mortality, respectively). For all cancers combined, the incidence rates were stable during 2000 through 2011 for males (+0.2% per year; P = .1), whereas they increased significantly (+2.2% per year; P cancer cases and deaths can be prevented through reducing the prevalence of risk factors, while increasing the effectiveness of clinical care delivery, particularly for those living in rural areas and in disadvantaged populations.

  16. Epidemiology of prostate cancer in India

    OpenAIRE

    Shalu Jain; Sunita Saxena; Anup Kumar

    2014-01-01

    Data from national cancer registries shows that incidence of certain cancers are on rise in India. The cancers which are showing significant increase in incidence rates include prostate, mouth and kidney among male population, corpus uteri, breast and thyroid among female population and lung cancer in both male and female populations. In the present review article we have focused on epidemiology of prostate cancer in Indian subcontinent in terms of incidence, survival, and mortality etc. The ...

  17. A report of the Malaysian dialysis registry of the National Renal Registry, Malaysia.

    Science.gov (United States)

    Lim, Y N; Lim, T O; Lee, D G; Wong, H S; Ong, L M; Shaariah, W; Rozina, G; Morad, Z

    2008-09-01

    The Malaysian National Renal Registry was set up in 1992 to collect data for patients on renal replacement therapy (RRT). We present here the report of the Malaysian dialysis registry. The objectives of this papar are: (1) To examine the overall provision of dialysis treatment in Malaysia and its trend from 1980 to 2006. (2) To assess the treatment rate according to the states in the country. (3) To describe the method, location and funding of dialysis. (4) To characterise the patients accepted for dialysis treatment. (5) To analyze the outcomes of the dialysis treatment. Data on patients receiving dialysis treatment were collected at initiation of dialysis, at the time of any significant outcome, as well as yearly. The number of dialysis patients increased from 59 in 1980 to almost 15,000 in 2006. The dialysis acceptance rate increased from 3 per million population in 1980 to 116 per million population in 2006, and the prevalence rate from 4 to 550 per million population over the same period. The economically advantaged states of Malaysia had much higher dialysis treatment rates compared to the less economically advanced states. Eighty to 90% of new dialysis patients were accepted into centre haemodialysis (HD), and the rest into the chronic ambulatory peritoneal dialysis (CAPD) programme. The government provided about half of the funding for dialysis treatment. Patients older than 55 years accounted for the largest proportion of new patients on dialysis since the 1990s. Diabetes mellitus has been the main cause of ESRD and accounted for more than 50% of new ESRD since 2002. Annual death rate averaged about 10% on HD and 15% on CAPD. The unadjusted 5-year patient survival on both HD and CAPD was about 80%. Fifty percent of dialysis patients reported very good median QoL index score. About 70% of dialysis patients were about to work full or part time. There has been a very rapid growth of dialysis provision in Malaysia particularly in the older age groups. ESRD

  18. The National Registry of Evidence-based Programs and Practices (NREPP)

    Data.gov (United States)

    U.S. Department of Health & Human Services — The National Registry of Evidence-based Programs and Practices (NREPP) is a searchable online registry of mental health and substance abuse interventions that have...

  19. 78 FR 1825 - Notice of Establishment of an Animal and Plant Health Inspection Service Stakeholder Registry

    Science.gov (United States)

    2013-01-09

    ... Inspection Service Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION... Service stakeholder registry. FOR FURTHER INFORMATION CONTACT: Ms. Hallie Zimmers, Advisor for State and Stakeholder Relations, Legislative and Public Affairs, APHIS, room 1147, 1400 Independence Avenue...

  20. 77 FR 2126 - Pipeline Safety: Implementation of the National Registry of Pipeline and Liquefied Natural Gas...

    Science.gov (United States)

    2012-01-13

    ... Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and Hazardous Materials Safety... 72878), titled: ``Pipeline Safety: Updates to Pipeline and Liquefied Natural Gas Reporting Requirements... registry of pipeline and liquefied natural gas operators. FOR FURTHER INFORMATION CONTACT: Jamerson...

  1. Cancer

    Science.gov (United States)

    ... Blood tests (which look for chemicals such as tumor markers) Bone marrow biopsy (for lymphoma or leukemia) Chest ... the case with skin cancers , as well as cancers of the lung, breast, and colon. If the tumor has spread ...

  2. Cancer

    Science.gov (United States)

    Cancer begins in your cells, which are the building blocks of your body. Normally, your body forms ... be benign or malignant. Benign tumors aren't cancer while malignant ones are. Cells from malignant tumors ...

  3. Postoperative mortality after cancer surgery in octogenarians and nonagenarians: results from a series of 5,390 patients.

    NARCIS (Netherlands)

    R.A. Damhuis (Ronald); C.J. Meurs (Claudia); W.S. Meijer (Willem)

    2005-01-01

    textabstractBACKGROUND: To support decisions about surgical treatment of elderly patients with cancer, population-based estimates of postoperative mortality (POM) rates are required. METHODS: Electronic records from the Rotterdam Cancer Registry were retrieved for octogenarians and nonagenarians who

  4. BioSWR--semantic web services registry for bioinformatics.

    Directory of Open Access Journals (Sweden)

    Dmitry Repchevsky

    Full Text Available Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL. Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL. BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

  5. Chemical Abstracts Service Chemical Registry System: History, Scope, and Impacts.

    Science.gov (United States)

    Weisgerber, David W.

    1997-01-01

    Describes the history, scope, and applications of the Chemical Abstracts Service Chemical Registry System, a computerized database that uniquely identifies chemical substances on the basis of their molecular structures. Explains searching the system is and discusses its use as an international resource. (66 references) (Author/LRW)

  6. European biliary atresia registries: summary of a symposium

    DEFF Research Database (Denmark)

    Petersen, C.; Harder, D.; Abola, Z.;

    2008-01-01

    Biliary atresia (BA) is a rare but potentially devastating disease. The European Biliary Atresia Registry (EBAR) was set up to improve data collection and to develop a pan-national and interdisciplinary strategy to improve clinical outcomes. From 2001 to 2005, 100 centers from 22 countries...

  7. National Marrow Donor Program and Be The Match Registry

    Science.gov (United States)

    ... version of this page please turn Javascript on. Feature: Bone Marrow Transplants The National Marrow Donor Program and Be The Match Registry Past Issues / Summer 2011 Table of Contents Creating connections. Saving lives. Founded in 1987 by the federal government, the ...

  8. Process produces accurate registry between circuit board prints

    Science.gov (United States)

    1966-01-01

    Tapes and quick-mount circles of contrasting colors aid in obtaining precise registry between the two circuits of two-sided printed circuit boards. The tapes and circles are mounted on opposite sides of transparent plastic film to define the conductive path and feed-through hole locations.

  9. Implementation and Analysis of Initial Trauma Registry in Iquitos, Peru

    Directory of Open Access Journals (Sweden)

    Vincent Duron

    2016-10-01

    Full Text Available Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%, motor vehicle collisions (23.3%, and blunt assault (10.5%. Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P < 0.001 and oxygen saturation (26 to 92%, P < 0.001 documentation was observed. Conclusion: A trauma registry is possible to implement in a resource-poor setting. Future efforts will focus on analysis of data to enhance prevention and treatment of injuries in Iquitos.

  10. hPSCreg--the human pluripotent stem cell registry.

    Science.gov (United States)

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-01

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179

  11. hPSCreg—the human pluripotent stem cell registry

    Science.gov (United States)

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-01

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179

  12. BioSWR--semantic web services registry for bioinformatics.

    Science.gov (United States)

    Repchevsky, Dmitry; Gelpi, Josep Ll

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

  13. The incidences and mortalities of major cancers in China, 2009

    Institute of Scientific and Technical Information of China (English)

    Wanqing Chen; Rongshou Zheng; Siwei Zhang; Ping Zhao; Guanglin Li; Lingyou Wu; Jie He

    2013-01-01

    In 2012,the National Central Cancer Registry (NCCR) of China collected cancer registration information for the year 2009 from local cancer registries and analyzed it to describe the incidences and mortalities of cancers in China.Based on the data quality criteria from NCCR,data from 104 registries covering 85,470,522 people (57,489,009 in urban areas and 27,981,513 in rural areas) were checked and evaluated.The data from 72 registries were qualified and accepted for the cancer registry annual report in 2012.The total cancer incident cases and cancer deaths were 244,366 and 154,310,respectively.The morphologically verified cases accounted for 67.23% and 3.14% of the incident cases only had information from death certifications.The crude incidence in the Chinese cancer registration areas was 285.91/100,000 (317.97/100,000 in males and 253.09/100,000 in females).The age-standardized rates for incidences based on the Chinese standard population (ASRIC) and the world standard population (ASRIW) were 146.87/100,000 and 191.72/100,000,respectively,with a cumulative incidence of 22.08%.The cancer mortality in the Chinese cancer registration areas was 180.54/100,000 (224.20/100,000 in males and 135.85/100,000 in females).The age-standardized rates for mortalities based on the Chinese standard population (ASRMC) and the world standard population (ASRMW) were 85.06/100,000 and 115.65/100,000,respectively,and the cumulative mortality was 12.94%.Lung cancer,gastric cancer,colorectal cancer,liver cancer,esophageal cancer,pancreatic cancer,encephaloma,lymphoma,female breast cancer,and cervical cancer were the most common cancers,accounting for 75% of all cancer cases.Lung cancer,gastric cancer,liver cancer,esophageal cancer,colorectal cancer,pancreatic cancer,breast cancer,encephaloma,leukemia,and lymphoma accounted for 80% of all cancer deaths.The cancer registration's population coverage has been increasing,and its data quality is improving.As the basis of the

  14. The Toxicology Investigators Consortium Case Registry--the 2012 experience.

    Science.gov (United States)

    Wiegand, Timothy; Wax, Paul; Smith, Eric; Hart, Katherine; Brent, Jeffrey

    2013-12-01

    In 2010, the American College of Medical Toxicology (ACMT) established its Case Registry, the Toxicology Investigators Consortium (ToxIC). All cases are entered prospectively and include only suspected and confirmed toxic exposures cared for at the bedside by board-certified or board-eligible medical toxicologists at its participating sites. The primary aims of establishing this Registry include the development of a realtime toxico-surveillance system in order to identify and describe current or evolving trends in poisoning and to develop a research tool in toxicology. ToxIC allows for extraction of data from medical records from multiple sites across a national and international network. All cases seen by medical toxicologists at participating institutions were entered into the database. Information characterizing patients entered in 2012 was tabulated and data from the previous years including 2010 and 2011 were included so that cumulative numbers and trends could be described as well. The current report includes data through December 31st, 2012. During 2012, 38 sites with 68 specific institutions contributed a total of 7,269 cases to the Registry. The total number of cases entered into the Registry at the end of 2012 was 17,681. Emergency departments remained the most common source of consultation in 2012, accounting for 61 % of cases. The most common reason for consultation was for pharmaceutical overdose, which occurred in 52 % of patients including intentional (41 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,422 entries in 13 % of cases) non-opioid analgesics (1,295 entries in 12 % of cases), opioids (1,086 entries in 10 % of cases) and antidepressants (1,039 entries in 10 % of cases). N-acetylcysteine (NAC) was the most common antidote administered in 2012, as it was in previous years, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab

  15. The Toxicology Investigators Consortium Case Registry--the 2012 experience.

    Science.gov (United States)

    Wiegand, Timothy; Wax, Paul; Smith, Eric; Hart, Katherine; Brent, Jeffrey

    2013-12-01

    In 2010, the American College of Medical Toxicology (ACMT) established its Case Registry, the Toxicology Investigators Consortium (ToxIC). All cases are entered prospectively and include only suspected and confirmed toxic exposures cared for at the bedside by board-certified or board-eligible medical toxicologists at its participating sites. The primary aims of establishing this Registry include the development of a realtime toxico-surveillance system in order to identify and describe current or evolving trends in poisoning and to develop a research tool in toxicology. ToxIC allows for extraction of data from medical records from multiple sites across a national and international network. All cases seen by medical toxicologists at participating institutions were entered into the database. Information characterizing patients entered in 2012 was tabulated and data from the previous years including 2010 and 2011 were included so that cumulative numbers and trends could be described as well. The current report includes data through December 31st, 2012. During 2012, 38 sites with 68 specific institutions contributed a total of 7,269 cases to the Registry. The total number of cases entered into the Registry at the end of 2012 was 17,681. Emergency departments remained the most common source of consultation in 2012, accounting for 61 % of cases. The most common reason for consultation was for pharmaceutical overdose, which occurred in 52 % of patients including intentional (41 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,422 entries in 13 % of cases) non-opioid analgesics (1,295 entries in 12 % of cases), opioids (1,086 entries in 10 % of cases) and antidepressants (1,039 entries in 10 % of cases). N-acetylcysteine (NAC) was the most common antidote administered in 2012, as it was in previous years, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab

  16. Limitations of drug registries to evaluate orphan medicinal products for the treatment of lysosomal storage disorders

    NARCIS (Netherlands)

    C.E.M. Hollak; J.M.F.G. Aerts; S. Aymé; J. Manuel

    2011-01-01

    Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and n

  17. Improving Diabetes Outcomes Using a Web-Based Registry and Interactive Education: A Multisite Collaborative Approach

    Science.gov (United States)

    Morrow, Robert W.; Fletcher, Jason; Kelly, Kim F.; Shea, Laura A.; Spence, Maureen M.; Sullivan, Janet N.; Cerniglia, Joan R.; Yang, YoonJung

    2013-01-01

    Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…

  18. Cancer rehabilitation indicators for Europe

    DEFF Research Database (Denmark)

    Baili, Paolo; Hoekstra-Weebers, Josette; Van Hoof, Elke;

    2013-01-01

    Little is known of cancer rehabilitation needs in Europe. EUROCHIP-3 organised a group of experts to propose a list of population-based indicators used for describing cancer rehabilitation across Europe. The aim of this study is to present and discuss these indicators. A EUROCHIP-3 expert panel...... reached agreement on two types of indicators. (a) Cancer prevalence indicators. These were proposed as a means of characterising the burden of cancer rehabilitation needs by time from diagnosis and patient health status. These indicators can be estimated from cancer registry data or by collecting data...... on follow-up and treatments for samples of cases archived in cancer registries. (b) Indicators of rehabilitation success. These include: return to work, quality of life, and satisfaction of specific rehabilitation needs. Studies can be performed to estimate these indicators in individual countries...

  19. Developing a provisional and national renal disease registry for Iran

    Directory of Open Access Journals (Sweden)

    Sima Ajami

    2015-01-01

    Full Text Available Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients′ characteristics as well as risk factors which eventually leads to making better decisions.

  20. Inception of a national multidisciplinary registry for stereotactic radiosurgery.

    Science.gov (United States)

    Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E

    2016-01-01

    Stereotactic radiosurgery (SRS) represents a multidisciplinary approach to the delivery of ionizing high-dose radiation to treat a wide variety of disorders. Much of the radiosurgical literature is based upon retrospective single-center studies along with a few randomized controlled clinical trials. More timely and effective evidence is needed to enhance the consistency and quality of and clinical outcomes achieved with SRS. The authors summarize the creation and implementation of a national SRS registry. The American Association of Neurological Surgeons (AANS) through NeuroPoint Alliance, Inc., started a successful registry effort with its lumbar spine initiative. Following a similar approach, the AANS and NeuroPoint Alliance collaborated with corporate partners and the American Society for Radiation Oncology to devise a data dictionary for an SRS registry. Through administrative and financial support from professional societies and corporate partners, a framework for implementation of the registry was created. Initial plans were devised for a 3-year effort encompassing 30 high-volume SRS centers across the country. Device-specific web-based data-extraction platforms were built by the corporate partners. Data uploaders were then used to port the data to a common repository managed by Quintiles, a national and international health care trials company. Audits of the data for completeness and veracity will be undertaken by Quintiles to ensure data fidelity. Data governance and analysis are overseen by an SRS board comprising equal numbers of representatives from the AANS and NeuroPoint Alliance. Over time, quality outcome assessments and post hoc research can be performed to advance the field of SRS. Stereotactic radiosurgery offers a high-technology approach to treating complex intracranial disorders. Improvements in the consistency and quality of care delivered to patients who undergo SRS should be afforded by the national registry effort that is underway. PMID

  1. Inception of a national multidisciplinary registry for stereotactic radiosurgery.

    Science.gov (United States)

    Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E

    2016-01-01

    Stereotactic radiosurgery (SRS) represents a multidisciplinary approach to the delivery of ionizing high-dose radiation to treat a wide variety of disorders. Much of the radiosurgical literature is based upon retrospective single-center studies along with a few randomized controlled clinical trials. More timely and effective evidence is needed to enhance the consistency and quality of and clinical outcomes achieved with SRS. The authors summarize the creation and implementation of a national SRS registry. The American Association of Neurological Surgeons (AANS) through NeuroPoint Alliance, Inc., started a successful registry effort with its lumbar spine initiative. Following a similar approach, the AANS and NeuroPoint Alliance collaborated with corporate partners and the American Society for Radiation Oncology to devise a data dictionary for an SRS registry. Through administrative and financial support from professional societies and corporate partners, a framework for implementation of the registry was created. Initial plans were devised for a 3-year effort encompassing 30 high-volume SRS centers across the country. Device-specific web-based data-extraction platforms were built by the corporate partners. Data uploaders were then used to port the data to a common repository managed by Quintiles, a national and international health care trials company. Audits of the data for completeness and veracity will be undertaken by Quintiles to ensure data fidelity. Data governance and analysis are overseen by an SRS board comprising equal numbers of representatives from the AANS and NeuroPoint Alliance. Over time, quality outcome assessments and post hoc research can be performed to advance the field of SRS. Stereotactic radiosurgery offers a high-technology approach to treating complex intracranial disorders. Improvements in the consistency and quality of care delivered to patients who undergo SRS should be afforded by the national registry effort that is underway.

  2. Home enteral nutrition in Spain: NADYA registry 2011-2012

    Directory of Open Access Journals (Sweden)

    Carmina Wanden-Berghe

    2014-06-01

    Full Text Available Objective: To describe the results of the home enteral nutrition (HEN registry of the NADYA-SENPE group in 2011 and 2012. Material and methods: We retrieved the data of the patients recorded from January 1st 2011 to December 31st 2012. Results: There were 3021 patients in the registry during the period from 29 hospitals, which gives 65.39 per million inhabitants. 97.95% were adults, 51.4% male. Mean age was 67.64 ± 19.1, median age was 72 years for adults and 7 months for children. Median duration with HEN was 351 days and for 97.5% was their first event with HEN. Most patients had HEN because of neurological disease (57.8%. Access route was nasogastric tube for 43.5% and gastrostomy for 33.5%. Most patients had limited activity level and, concerning autonomy, 54.8% needed total help. Nutritional formula was supplied from chemist's office to 73.8% of patients and disposables, when necessary, was supplied from hospitals to 53.8% of patients. HEN was finished for 1,031 patients (34.1% during the period of study, 56.6% due to decease and 22.2% due to recovery of oral intake. Conclusions: Data from NADYA-SENPE registry must be explained cautiously because it is a non-compulsory registry. In spite of the change in the methodology of the registry in 2010, tendencies regarding HEN have been maintained, other than oral route.

  3. Four years of North American registry home parenteral nutrition outcome data and their implications for patient management

    Energy Technology Data Exchange (ETDEWEB)

    Howard, L.; Heaphey, L.; Fleming, C.R.; Lininger, L.; Steiger, E. (Division of Clinical Nutrition, Albany Medical Center, New York (United States))

    1991-07-01

    The OASIS Registry started annual collection of longitudinal data on patients on home parenteral nutrition (HPN) in 1984. This report describes outcome profiles on 1594 HPN patients in seven disease categories. Analysis showed clinical outcome was principally a reflection of the underlying diagnosis. Patients with Crohn's disease, ischemic bowel disease, motility disorders, radiation enteritis, and congenital bowel dysfunction all had a fairly long-term clinical outcome, whereas those with active cancer and acquired immunodeficiency syndrome (AIDS) had a short-term outcome. The long-term group had a 3-year survival rate of 65 to 80%, they averaged 2.6 complications requiring hospitalization per year, and 49% experienced complete rehabilitation. The short-term group had a mean survival of 6 months; they averaged 4.6 complications per year and about 15% experienced complete rehabilitation. The registry data also indicated HPN was used for 19,700 patients in 1987 with therapy growth averaging about 8% per year. This growth was chiefly from new cancer patients. The number of new patients with long-term disorders in whom HPN was initiated appeared rather constant. The authors conclude that these clinical outcome assessments justify HPN for long-term patients, but the utility and appropriateness of HPN for the cancer and AIDS patients remains uncertain and requires further study. Medical, social, and fiscal aspects of HPN management in long-term and short-term patients appear to involve quite separate considerations.

  4. The incidence and mortality of major cancers in China, 2012

    Institute of Scientific and Technical Information of China (English)

    Wanqing Chen; Rongshou Zheng; Hongmei Zeng; Siwei Zhang

    2016-01-01

    Background: The National Central Cancer Registry (NCCR) collected population-based cancer registration data in 2012 from local registries and estimated the cancer incidence and mortality in China. Methods: In the middle of 2015, 261 cancer registries submitted reports on new cancer cases and deaths occurred in 2012. Qualiifed data from 193 registries were used for analysis after evaluation. Crude rates, number of cases, and age-standardized rates stratiifed by area (urban/rural), sex, age group, and cancer type were calculated according to the national population in 2012. Results: The covered population were 198,060,406 from 193 qualiifed cancer registries (74 urban and 119 rural reg-istries). The major indicators of quality control, percentage of cases morphologically veriifed (MV%), death certiifcate-only cases (DCO%), and the mortality to incidence (M/I) ratio, were 69.13%, 2.38%, and 0.62, respectively. It was esti-mated that there were 3,586,200 new cancer cases and 2,186,600 cancer deaths in 2012 in China with an incidence of 264.85/100,000 [age-standardized rate of incidence by the Chinese standard population (ASRIC) of 191.89/100,000] and a mortality of 161.49/100,000 [age-standardized rate of mortality by the Chinese standard population (ASRMC) of 112.34/100,000]. The ten most common cancer sites were the lung, stomach, liver, colorectum, esophagus, female breast, thyroid, cervix, brain, and pancreas, accounting for approximately 77.4%of all new cancer cases. The ten lead-ing causes of cancer death were lung cancer, liver cancer, gastric cancer, esophageal cancer, colorectal cancer, pancre-atic cancer, female breast cancer, brain tumor, leukemia, and lymphoma, accounting for 84.5%of all cancer deaths. Conclusions: Continuous cancer registry data provides basic information in cancer control programs. The cancer burden in China is gradually increasing, both in urban and rural areas, in males and females. Effcient cancer preven-tion and control, such as

  5. Medical complications in patients with stroke: data validity in a stroke registry and a hospital discharge registry

    Directory of Open Access Journals (Sweden)

    Annette Ingeman

    2010-03-01

    Full Text Available Annette Ingeman1, Grethe Andersen2, Heidi H Hundborg1, Søren P Johnsen11Department of Clinical Epidemiology, 2Department of Neurology, Aarhus University Hospital, DenmarkBackground: Stroke patients frequently experience medical complications; yet, data on incidence, causes, and consequences are sparse.Objective: To examine the data validity of medical complications among patients with stroke in a population-based clinical registry and a hospital discharge registry.Methods: We examined the predictive values, sensitivity and specificity of medical complications among patients admitted to specialized stroke units and registered in the Danish National Indicator Project (DNIP and the Danish National Registry of Patients (NRP between January 2003 and December 2006 (n = 8,024. We retrieved and reviewed medical records from a random sample of patients (n = 589, 7.3%.Results: We found substantial variation in the data quality of stroke-related medical complication diagnoses both within the specific complications and between the registries. The positive predictive values ranged from 39.0%–87.1% in the DNIP, and from 0.0%–92.9% in the NRP. The negative predictive values ranged from 71.6%–98.9% in the DNIP and from 63.3% to 97.4% in the NRP. In both registries the specificity of the diagnoses was high. The sensitivity ranged from 23.5% (95% confidence interval [CI]: 14.9–35.4 for falls to 62.9% (95% CI: 54.9–70.4 for urinary infection in the DNIP, and from 0.0 (95% CI: 0.0–4.99 for falls to 18.1% (95% CI: 2.3–51.8 for pressure ulcer in the NRP.Conclusion: The DNIP may be useful for studying medical complications among patients with stroke.Keywords: stroke, medical complications, data validity, clinical database

  6. Challenges of the Oral Cancer Burden in India

    OpenAIRE

    Ken Russell Coelho

    2012-01-01

    Oral cancer ranks in the top three of all cancers in India, which accounts for over thirty per cent of all cancers reported in the country and oral cancer control is quickly becoming a global health priority. This paper provides a synopsis of the incidence of oral cancer in India by focusing on its measurement in cancer registries across the country. Based on the International Classification of Disease case definition adopted by the World Health Organisation, and the International Agency for ...

  7. Epidemiology of Gastric Cancer in Northwest Iran: 2003-2011

    OpenAIRE

    Firouz Amani; Mohammad Sadrkabir; Saeid Sadeghieh Ahari; Saeid Barzghari; Abbas Yazdanbod; Ahmad Sabzevari; Moghgan Hadavi

    2015-01-01

    Background: Gastric cancer is the fifth most common cancer in the world and the third leading cause of death from cancer worldwide. This study aims to assess the epidemiology of gastric cancer in Ardabil Province, Iran. Methods: This was a descriptive cross-sectional study performed on 1056 patients with gastric cancer registered in the Ardabil Cancer Registry. Data were collected by a checklist and analyzed by statistical methods in SPSS version 19. Results: Out of 1056 cas...

  8. Risk Factors for Pancreatic Cancer in China: A Multicenter Case-Control Study

    OpenAIRE

    Zhaoxu Zheng

    2016-01-01

    Background: Despite having one of the highest mortality rates of all cancers, the risk factors of pancreatic cancer remain unclear. We assessed risk factors of pancreatic cancer in China. Methods: A case-control study design was conducted using data from four hospital-based cancer registries (Henan Provincial Cancer Hospital, Beijing Cancer Hospital, Hebei Provincial Cancer Hospital, and Cancer Hospital of Chinese Academy of Medical Sciences). Controls were equally matched and selected fro...

  9. [Cancer].

    Science.gov (United States)

    de la Peña-López, Roberto; Remolina-Bonilla, Yuly Andrea

    2016-09-01

    Cancer is a group of diseases which represents a significant public health problem in Mexico and worldwide. In Mexico neoplasms are the second leading cause of death. An increased morbidity and mortality are expected in the next decades. Several preventable risk factors for cancer development have been identified, the most relevant including tobacco use, which accounts for 30% of the cancer cases; and obesity, associated to another 30%. These factors, in turn, are related to sedentarism, alcohol abuse and imbalanced diets. Some agents are well knokn to cause cancer such as ionizing radiation, viruses such as the papilloma virus (HPV) and hepatitis virus (B and C), and more recently environmental pollution exposure and red meat consumption have been pointed out as carcinogens by the International Agency for Research in Cancer (IARC). The scientific evidence currently available is insufficient to consider milk either as a risk factor or protective factor against different types of cancer. PMID:27603890

  10. Need for a roadmap for development of a coordinated national registry programme.

    Science.gov (United States)

    Wilkins, S; Best, R L; Evans, S M

    2015-11-01

    Clinical quality registries are an overlooked and under-funded arm of clinical research in Australia. Registries are databases for patients with a particular disease, or who undergo a procedure, or use a health resource. Registries, where properly funded and universally adopted, have provided substantial benefits to the quality of healthcare and, in some cases, have had demonstrable effect in reducing costs. There is a lack of a coordinated programme for both funding and development of registries in Australia. A coordinated effort is required to address key gaps in registry coverage and ensure registries comply with appropriate technical and operating principles, and target areas where registries can add value to the health system. This will ensure that Australia is competitive with its international peers in this dynamic environment.

  11. Registry Evaluation of Digital Ulcers in Systemic Sclerosis

    Directory of Open Access Journals (Sweden)

    Felice Galluccio

    2010-01-01

    Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.

  12. Need for Renal Biopsy Registry in Saudi Arabia

    Directory of Open Access Journals (Sweden)

    Al-Homrany Mohammad

    2008-01-01

    Full Text Available Many renal lesions may result in chronic kidney disease if not detected early or treated properly. Glomerulonephritis is considered one of the leading causes of end-stage renal disease. The prevalence of different renal lesions were identified by inconsistent studies. The causes of inconsistencies include lack of unified methods in diagnosing and processing renal biopsies by different pathologists, patients selection′s bias for renal biopsy, and the variable policies and protocols adopted by different nephrologists. Establishment of renal biopsy registry may help to surmount these differences. In addition, combined data obtained from renal biopsy renal and replacement therapy registries can help study the long-term outcome of patients with renal diseases.

  13. The International Quotidian Dialysis Registry: annual report 2006.

    Science.gov (United States)

    Nesrallah, Gihad E; Suri, Rita S; Zoller, Rezso; Garg, Amit X; Moist, Louise M; Lindsay, Robert M

    2006-07-01

    Interest in short daily and nocturnal hemodialysis (HD) regimens continues to grow worldwide. Despite growing optimism that these therapies will afford better patient outcomes over conventional HD, the current literature has not been viewed as sufficiently compelling to affect widespread implementation in most jurisdictions. Before these therapies can gain wider acceptance, larger and more rigorous studies will likely be needed. In June 2004, the Quotidian Dialysis Registry, based at the Lawson Health Research Institute at the University of Western Ontario, Canada, began recruiting patients across North America. By using an Internet-based data entry platform, patients from various centers worldwide will eventually be recruited, and studied prospectively. This paper constitutes the second annual update on patient and center recruitment, patient and treatment characteristics, and future directions for the registry. PMID:16805881

  14. Observatory and registry of school buildings for maintenance planning

    Directory of Open Access Journals (Sweden)

    Maria Rita Pinto

    2015-04-01

    Full Text Available The issue of the school has been a priority in the political agenda of the successive Italian governments during the last decade. This priority is also due to the size of the school real estate, consisting of approximately 41,000 buildings. The recent reactivation of the Observatory of School Buildings and of the Registry is an opportunity to improve maintenance planning. The paper deals with the role of the Observatory in monitoring the conservation status of school real estate, and the objectives to be pursued through the activation of the School Building Registry. Indeed, the integration with UNI standards in the field of maintenance can produce positive results in terms of quality and quantity of data available for the Information System, which represents an essential tool to streamline time and costs of inspections and interventions.

  15. Nanotubes Motion on Layered Materials: A Registry Perspective

    CERN Document Server

    Oz, Inbal; Itkin, Yaron; Buchwalter, Asaf; Akulov, Katherine; Hod, Oded

    2015-01-01

    At dry and clean material junctions of rigid materials the corrugation of the sliding energy landscape is dominated by variations of Pauli repulsions. These occur when electron clouds centered around atoms in adjacent layers overlap as they slide across each other. In such cases there exists a direct relation between interfacial surface (in)commensurability and superlubricity, a frictionless and wearless tribological state. The Registry Index is a purely geometrical parameter that quanti?es the degree of interlayer commensurability, thus providing a simple and intuitive method for the prediction of sliding energy landscapes at rigid material interfaces. In the present study, we extend the applicability of the Registry Index to non-parallel surfaces, using a model system of nanotubes motion on ?at hexagonal materials. Our method successfully reproduces sliding energy landscapes of carbon nanotubes on Graphene calculated using a Lennard-Jones type and the Kolmogorov-Crespi interlayer potentials. Furthermore, it...

  16. Cancer Incidence and Mortality in China, 2007

    Institute of Scientific and Technical Information of China (English)

    Wan-qing Chen; Hong-mei Zeng; Rong-shou Zheng; Si-wei Zhang; Jie He

    2012-01-01

    Objective:Cancer incidence and mortality data collected from population-based cancer registries were analyzed to present the overall cancer statistics in Chinese registration areas by age,sex and geographic area in 2007.Methods:In 2010,48 cancer registries reported cancer incidence and mortality data of 2007 to National Central Cancer Registry of China.Of them,38 registries' data met the national criteria.Incidence and mortality were calculated by cancer sites,age,gender,and area.Age-standardized rates were described by China and World population.Results:The crude incidence rate for all cancers was 276.16/100,000 (305.22/100,000 for male and 246.46/100,000 for female; 284.71/100,000 in urban and 251.07/100,000 in rural).Age-standardized incidence rates by China and World population were 145.39/100,000 and 189.46/100,000 respectively.The crude mortality rate for all cancers was 177.09/100,000 (219.15/100,000 for male and 134.10/100,000 for female; 173.55/100,000 in urban and 187.49/100,000 in rural).Age-standardized mortality rates by China and World population were 86.06/100,000 and 116.46/100,000,respectively.The top 10 most frequently common cancer sites were the lung,stomach,colon and rectum,liver,breast,esophagus,pancreas,bladder,brain and lymphoma,accounting for 76.12% of the total cancer cases.The top 10 causes of cancer death were cancers of the lung,liver,stomach,esophagus,colon and rectum,pancreas,breast,leukemia,brain and lymphoma,accounting for 84.37% of the total cancer deaths.Conclusion:Cancer remains a major disease threatening people's health in China.Prevention and control should be enhanced,especially for the main cancers.

  17. Nationwide quality improvement in lung cancer care

    DEFF Research Database (Denmark)

    Jakobsen, Erik Winther; Green, Anders; Oesterlind, Kell;

    2013-01-01

    To improve prognosis and quality of lung cancer care the Danish Lung Cancer Group has developed a strategy consisting of national clinical guidelines and a clinical quality and research database. The first edition of our guidelines was published in 1998 and our national lung cancer registry...... was opened for registrations in 2000. This article describes methods and results obtained by multidisciplinary collaboration and illustrates how quality of lung cancer care can be improved by establishing and monitoring result and process indicators....

  18. Results from a multicentre international registry of familial Mediterranean fever

    DEFF Research Database (Denmark)

    Ozen, Seza; Demirkaya, Erkan; Amaryan, Gayane;

    2014-01-01

    BACKGROUND AND AIM: Familial Mediterranean fever (FMF) is an autoinflammatory disease caused by mutations of the MEFV gene. We analyse the impact of ethnic, environmental and genetic factors on the severity of disease presentation in a large international registry. METHODS: Demographic, genetic...... Mediterranean patients whether they lived in their countries or western European countries. European patients had a lower frequency of the high penetrance M694V mutation and a significant delay of diagnosis (pfever episodes...

  19. The German Aortic Valve Registry (GARY): in-hospital outcome

    OpenAIRE

    Hamm, Christian W.; Möllmann, Helge; Holzhey, David; Beckmann, Andreas; Veit, Christof; Figulla, Hans-Reiner; Cremer, J; Kuck, Karl-Heinz; Lange, Rüdiger; Zahn, Ralf; Sack, Stefan; Schuler, Gerhard; Walther, Thomas; Beyersdorf, Friedhelm; Böhm, Michael

    2013-01-01

    Background Aortic stenosis is a frequent valvular disease especially in elderly patients. Catheter-based valve implantation has emerged as a valuable treatment approach for these patients being either at very high risk for conventional surgery or even deemed inoperable. The German Aortic Valve Registry (GARY) provides data on conventional and catheter-based aortic procedures on an all-comers basis. Methods and results A total of 13 860 consecutive patients undergoing repair for aortic valve d...

  20. Gender differences in acute stroke: Istanbul medical school stroke registry

    OpenAIRE

    Nilüfer Yesilot; Bahar Aksay Koyuncu; Oguzhan Çoban; Rezzan Tuncay; Sara Zarko Bahar

    2011-01-01

    Background : We aimed to investigate gender differences in Turkish stroke patients. Material and Methods : Demographics, risk factors, clinical and etiologic subtypes, laboratory findings, clinical course, and in-hospital prognosis of 1 522 patients with ischemic stroke (IS) and 320 patients with intracerebral hemorrhage prospectively registered in the Istanbul Medical School Stroke Registry (1994-2004) were analyzed separately. Results : The mean age of IS patients was higher in females (n :...

  1. Pleural Mesothelioma Surveillance: Validity of Cases from a Tumour Registry

    Directory of Open Access Journals (Sweden)

    France Labrèche

    2012-01-01

    Full Text Available BACKGROUND: Pleural mesothelioma is a rare tumour associated with exposure to asbestos fibres. Fewer than than one-quarter of cases registered in the Quebec Tumour Registry (QTR have been compensated as work-related. While establishing a surveillance system, this led to questioning as to whether there has been over-registration of cases that are not authentic pleural mesotheliomas in the QTR.

  2. Baseline Characteristics of the Korean Registry of Pulmonary Arterial Hypertension

    OpenAIRE

    Chung, Wook-Jin; Park, Yong Bum; Jeon, Chan Hong; Jung, Jo Won; Ko, Kwang-Phil; Choi, Sung Jae; Seo, Hye Sun; Lee, Jae Seung; Jung, Hae Ok; ,

    2015-01-01

    Despite recent advances in understanding of the pathobiology and targeted treatments of pulmonary arterial hypertension (PAH), epidemiologic data from large populations have been limited to western countries. The aim of the Korean Registry of Pulmonary Arterial Hypertension (KORPAH) was to examine the epidemiology and prognosis of Korean patients with PAH. KORPAH was designed as a nationwide, multicenter, prospective data collection using an internet webserver from September 2008 to December ...

  3. Testicular cancer trends as 'whistle blowers' of testicular developmental problems in populations

    DEFF Research Database (Denmark)

    Skakkebaek, N E; Rajpert-De Meyts, Ewa; Jørgensen, N;

    2007-01-01

    in TGCC rates of a population may be 'whistle blowers' of other reproductive health problems. As cancer registries are often of excellent quality - in contrast to registries for congenital abnormalities - health authorities should consider an increase in TGCC as a warning that other reproductive health...

  4. Types of Cancer Associated with Transplant Recipients

    Science.gov (United States)

    ... cancer can be transmitted through deceased and living donor organ, cell and tissue transplantation. Treatment of donor related ... 2000. First Report of the United Network for Organ Sharing Transplant Tumor Registry: Donors with a History of Cancer. Transplantation 80:883- ...

  5. Systemic Treatment Approaches in Breast Cancer

    NARCIS (Netherlands)

    M. Bontenbal (Marijke)

    1997-01-01

    textabstractBreast cancer is the most conmlon malignant tumor among women, with an estimated 135,000 new cases and 58,000 recorded deaths per year in the Europeau Community in 1990. With respect to the Netherlands, the most recent data of The Netherlands Cancer Registry show an incidence of nearly 1

  6. Military Orthopaedic Trauma Registry: Quality Data Now Available.

    Science.gov (United States)

    Rivera, Jessica C; Greer, Renee M; Wenke, Joseph C; Ficke, James R; Johnson, Anthony E

    2016-01-01

    The Military Orthopaedic Trauma Registry (MOTR) orginally began as part of the Department of Defense Trauma Registry (DoDTR) and became a live registry in 2013. As a quality improvement process, this study examined MOTR data for 20 female amputees compared with DoDTR data. The DoDTR provided diagnosis and procedure codes as a list but no details. The MOTR provided additional data, including specific limb, fracture classifications, and associated injuries per limb. The MOTR allowed for construction of a treatment time line for each limb, including number and timing of debridements, antibiotics, and implant types. Orthopaedic-specific complications were also coded more frequently in the MOTR and clearly identified with a specific injury and treatment. During initial quality control checks, the MOTR provides a greater volume and granularity of detail for orthopaedic-specific injury and treatment information, indicating that the MOTR is on track to provide a valuable repository for data-driven orthopaedic management of combat injury. PMID:27518292

  7. The importance of rheumatology biologic registries in Latin America.

    Science.gov (United States)

    de la Vega, Maria; da Silveira de Carvalho, Hellen M; Ventura Ríos, Lucio; Goycochea Robles, Maria V; Casado, Gustavo C

    2013-04-01

    Rheumatoid arthritis is a systemic inflammatory disorder characterized by joint articular pain and disability. Although there is scarcity of data available on the incidence and prevalence of RA in Latin America, there is a growing recognition of this disease where chronic diseases are on the rise and infectious disease on the decline. RA is a substantial burden to patients, society, and the healthcare system. The heterogeneity identified within RA presents an opportunity for personalized medicine, especially in regions with such demographic diversity as that of Latin America. To understand the long-term effects of treatment for RA especially on safety, registries have been established, a number of which have been created in Latin America. Despite their weaknesses (e.g., lack of controls and randomization), registries have provided additional and complementary information on the use of biologics in clinical practice in Latin America and other regions. Although certain challenges remain in the implementation and maintenance of registries, they continue to provide real-life data to clinical practice contributing to improved patient care.

  8. The German IVF-Registry – D·I·R

    Directory of Open Access Journals (Sweden)

    Bühler K

    2013-01-01

    Full Text Available Systematic data collection in the field of assisted reproductive techniques is performed in Germany since 30 years. Since 1997, data collection is performed electronically and in a prospective way. In 1998, by a code of the German Medical Association participation at the registry has become mandatory for all IVF centres in Germany. Different software solutions can be used in the centres for data collection. All of them have to cooperate with a special “DIRmod-DLL”, controlling online plausibility and prospectivity of the collected data. More than one million treatment cycles have been reported in the annuals published since 1996 up to 2010. All in all 1.2 millions cycles are included in the registry. Clinical pregnancy rate increased continuously and miscarriage rate decreased. By reduction of the mean number of transferred embryos of about 20% the percentage of born triplets in relationship to all children born after ART decreased of about 80%. It can be shown with the huge number of documented cycles that political decisions exert a dominating influence on treatment and drug choice. The German IVF registry has been established over the last 30 years as an instrument of quality assurance and has experienced highest regard by colleagues and by the international scientific world.

  9. Implementation and analysis of initial trauma registry in Iquitos, Peru

    Science.gov (United States)

    Duron, Vincent; DeUgarte, Daniel; Bliss, David; Salazar, Ernesto; Casapia, Martin; Ford, Henri; Upperman, Jeffrey

    2016-01-01

    Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%), motor vehicle collisions (23.3%), and blunt assault (10.5%). Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P analysis of data to enhance prevention and treatment of injuries in Iquitos.

  10. [Cancer incidence and mortality in some health districts in Brescia area 1993--1995].

    Science.gov (United States)

    Simonati, C; Limina, R M; Gelatti, U; Indelicato, A; Scarcella, C; Donato, F; Nardi, G

    2004-01-01

    Cancer Registries are an essential part of any rational programme of cancer control, for assessing the impact of cancer in the community, for health care planning and monitoring screening programmes, according to local enviromental problems. The Brescia Cancer Registry started in 1994 producing prevalence, incidence and mortality data using only manual procedures of colletting and processing data from clinical and pathological sources in Brescia in 1993--1995. Data quality indicators such as the percentages of istologically or cytologically verified cases and that of cases registered on the basis of Death Certificate Only (DCO) are similar to those from the other Northern Italian Registries. Incidence rates for all causes and for various common sites are higher in Brescia than in other areas covered by Cancer Registries in North of Italy. PMID:15697007

  11. [Lucky National Registry (Luxembourg Acute Myocardial Infarction Registry). Are women much better taken care of than men?].

    Science.gov (United States)

    Oprea, Irina; Vaillant, Michel; Hesse, Malou; Jacobs, Loredana; Beissel, Jean; Wagner, Daniel R

    2008-01-01

    The national LUCKY registry (Luxembourg Acute Myocardial Infarction Registry) confirms for Luxembourg that transfer of patients with acute myocardial infarction for primary percutaneous coronary intervention (PCI) is very effective. However, while mortality is low after PCI, a third of the patients with acute myocardial infarction develop severe left ventricular dysfunction. This may in part be explained by relatively long time delays between onset of symptoms and opening of the infarct-related artery, despite short distances between hospitals (time is myocardium). Surprisingly, in comparison with men, women are younger, have a higher body mass index and receive less evidence-based therapies such as statins before and after myocardial infarction. In conclusion, PCI has substantially improved the treatment of acute myocardial infarction in Luxembourg, but all actors including the patient have to keep efforts high to minimize time delays.

  12. Breast cancer survival and stage at diagnosis in Australia, Canada, Denmark, Norway, Sweden and the UK, 2000-2007: a population-based study

    OpenAIRE

    Walters, S.; Maringe, C; Butler, J.; Rachet, B; Barrett-Lee, P; Bergh, J; Boyages, J.; P. Christiansen; Lee, M.; Wärnberg, F; Allemani, C; Engholm, G; Fornander, T.; Gjerstorff, M L; Johannesen, T. B.

    2013-01-01

    Background: We investigate whether differences in breast cancer survival in six high-income countries can be explained by differences in stage at diagnosis using routine data from population-based cancer registries. Methods: We analysed the data on 257 362 women diagnosed with breast cancer during 2000–7 and registered in 13 population-based cancer registries in Australia, Canada, Denmark, Norway, Sweden and the UK. Flexible parametric hazard models were used to estimate net survival and the ...

  13. Drug safety of systemic treatments for psoriasis: results from The German Psoriasis Registry PsoBest.

    Science.gov (United States)

    Reich, K; Mrowietz, U; Radtke, M A; Thaci, D; Rustenbach, S J; Spehr, C; Augustin, M

    2015-12-01

    The German Psoriasis Registry PsoBest was conducted in 2008 in order to investigate the long-term outcomes and safety of systemic treatments for moderate-to-severe psoriasis. Safety analysis of antipsoriatic drugs with special focus on serious adverse events (SAE) for infections, malignancies and major cardiac events (MACE) was done. Nationwide non-interventional patient treatment registry conducted in 251 active dermatology centers. Until June 2012, n = 2444 patients [40 % female; mean age 47.3 (SD 14.1) years; mean duration of disease 18.2 (SD 14.7) years] were recruited, including n = 1791 patients (3842 patient years) with conventional systemic drugs and n = 908 (3442 patient years) with biological drugs. Mean PASI (Psoriasis Area and Severity Index) at inclusion was 14.7, mean DLQI (Dermatology Life Quality Index) 11.1, mean BMI (Body Mass Index) 28.2. The overall rate of SAE per 100 patient years were 1.3 (SD 0.9) per 100 patient years in conventional systemic and 1.5 (SD 1.2) in biologics (p > 0.5, no significant difference). The rates per 100 patient years for single severe adverse events were as follows (systemic/biologics): serious infections, 0.33/0.65 [CI (confidence interval) 0.13-0.54/0.35-0.98]; MACE, 0.56/0.77 (CI 0.29-0.97/0.41-1.31); malignancies (except non-melanoma skin cancer), 0.46/0.49 (CI 0.22-0.84/0.21-0.97). There were no significant differences between single drugs in any of the safety parameters. The conventional systemic and biologic drugs for psoriasis show satisfying safety under routine psoriasis care in Germany with respect to infections, MACE and malignancies.

  14. Myastenia and risk of cancer

    DEFF Research Database (Denmark)

    Greve Pedersen, Emil; Pottegård, Anton; Hallas, Jesper;

    2014-01-01

    BACKGROUND AND PURPOSE: To evaluate the association between having non-thymoma myasthenia and the risk of extra-thymic cancer in a population-based setting. METHODS: A nationwide case-control study was conducted in Denmark based on medical registries. The study included all cases with a first tim...

  15. Fear Arousing Persuasive Communication: The Use of Threat and Coping Appraisal in Breast Cancer Messages

    OpenAIRE

    Karuoya Simon Njoroge; Helen Mberia

    2014-01-01

    At present, breast cancer is having a severe effect in Kenya and it forms a serious threat to Kenyan women. In Kenya, breast cancer is the most common reproductive organ cancer which contributed 23% of all female cancers with one out of every nine women being diagnosed with advanced breast cancer (Neondo, 2006). According to the regional cancer registry at Kenya Medical Research Institute, about 80% of reported cases of cancer in Kenya are diagnosed at advanced stages, when very little can be...

  16. Endometrial and cervical cancer: incidence and mortality among women in the Lodz region

    OpenAIRE

    Beata Leśniczak; Grzegorz Krasomski; Przemysław Oszukowski; Tomasz Stetkiewicz; Piotr Woźniak

    2015-01-01

    Introduction: By the early 21st century the most common cancer of female genitals in Poland was cervical cancer. Now endometrial cancer ranks first. The aim of this study was to analyse the incidence and mortality of endometrial and cervical cancer among women in the Lodz region. Material and methods: Data on the incidence and mortality of endometrial and cervical cancer among inhabitants of the Lodz region were obtained from the National Cancer Registry and Bulletin of Cancer Cases...

  17. Tumors that Mimic Asbestos-Related Mesothelioma: Time to Consider a Genetics-Based Tumor Registry?

    Directory of Open Access Journals (Sweden)

    Brent Daniel Kerger

    2014-05-01

    Full Text Available The diagnosis of mesothelioma is not always straightforward, despite known immunohistochemical markers and other diagnostic techniques. One reason for the difficulty is that extrapleural tumors resembling mesothelioma may have several possible etiologies, especially in cases with no meaningful history of amphibole asbestos exposure. When the diagnosis of mesothelioma is based on histologic features alone, primary mesotheliomas may resemble various primary or metastatic cancers that have directly invaded the serosal membranes. Some of these metastatic malignancies, particularly carcinomas and sarcomas of the pleura, pericardium and peritoneum, may undergo desmoplastic reaction in the pleura, thereby mimicking mesothelioma, rather than the primary tumor. Encasement of the lung by direct spread or metastasis, termed pseudomesotheliomatous spread, occurs with several other primary cancer types, including certain late-stage tumors from genetic cancer syndromes exhibiting chromosomal instability. Although immunohistochemical staining patterns differentiate most carcinomas, lymphomas, and mestastatic sarcomas from mesotheliomas, specific genetic markers in tumor or somatic tissues have been recently identified that may also distinguish these tumor types from asbestos-related mesothelioma. A registry for genetic screening of mesothelioma cases would help lead to improvements in diagnostic criteria, prognostic accuracy and treatment efficacy, as well as improved estimates of primary mesothelioma incidence and of background rates of cancers unrelated to asbestos that might be otherwise mistaken for mesothelioma. This information would also help better define the dose-response relationships for mesothelioma and asbestos exposure, as well as other risk factors for mesothelioma and other mesenchymal or advanced metastatic tumors that may be indistinguishable by histology and staining characteristics.

  18. Hepatocellular carcinoma after kidney transplantation: analysis of Hong Kong Renal Registry.

    Science.gov (United States)

    Cheung, Chi Yuen; Lam, Man Fai; Chow, Kai Ming; Lee, William; Cheng, Yuk Lun; Yuen, Sze Kit; Wong, Ping Nam; Mo, Ka Leung; Leung, Kay Tai; Wong, Sze Ho; Ho, Yiu Wing; Chau, Ka Foon

    2014-07-01

    Kidney transplant recipients have increased risk of cancers when compared with the general population. Hepatocellular carcinoma (HCC) is extremely important in Asia where hepatitis B virus (HBV) infection is endemic. The aim is to study the epidemiological and clinical aspects of all de novo HCC in our kidney transplant recipients. Moreover, various preventive strategies which may help to optimize the outcome will also be discussed. A retrospective review of all patients who developed HCC after kidney transplantation between May 1972 and December 2011 in Hong Kong, based on the data from Hong Kong Renal Registry. After a follow-up period of 40,246 person-years, 20 patients (males 15: females 5) developed HCC. The annual incidence was 49.7/100,000 persons per year. Among them, 16 were HBV carriers, 2 were hepatitis C (HCV) carriers and 2 had HBV and HCV co-infection. Presence of HBV infection was associated with 78-fold higher risk for HCC development. Majority (85%) were asymptomatic when HCC was diagnosed by ultrasound or alpha-fetoprotein surveillance. All patients diagnosed by surveillance received active treatment while 2/3 of symptomatic patients could only receive symptomatic care and died rapidly. In conclusion, HBV infection is the major etiological factor for HCC development in kidney transplant recipients in HBV endemic areas. Regular HCC surveillance appeared to be able to detect early stage cancers which are amenable to treatment and offer the best hope of cure.

  19. Prevalence of pathogenic mutations in cancer predisposition genes among pancreatic cancer patients

    OpenAIRE

    Hu, Chunling; Steven N Hart; William R Bamlet; Moore, Raymond M.; Nandakumar, Kannabiran; Bruce W Eckloff; Lee, Yean K.; Petersen, Gloria M.; Robert R McWilliams; Couch, Fergus J.

    2015-01-01

    The prevalence of germline pathogenic mutations in a comprehensive panel of cancer predisposition genes is not well defined for patients with pancreatic ductal adenocarcinoma (PDAC). To estimate the frequency of mutations in a panel of 22 cancer predisposition genes, 96 patients unselected for a family history of cancer who were recruited to the Mayo Clinic Pancreatic Cancer patient registry over a 12 month period were screened by next-generation sequencing. Fourteen pathogenic mutations in 1...

  20. Early stage cervical cancer : quality of cancer care and quality of life

    NARCIS (Netherlands)

    Pieterse, Quirine Dionne

    2007-01-01

    To improve quality of cancer care treatment-related information is needed. This could be acquired by registries. Since January 1984, the Leiden University Medical Center (LUMC) collects prospectively more than 200 relevant clinical and pathological parameters of women with cervical cancer treated in

  1. Cancer incidence in Thailand, 1995-1997.

    Science.gov (United States)

    Sriplung, Hutcha; Sontipong, Sineenat; Martin, Nimit; Wiangnon, Surapon; Vootiprux, Visoot; Cheirsilpa, Arkom; Kanchanabat, Chol; Khuhaprema, Theeravud

    2005-01-01

    There are five population-based cancer registries in Thailand in different regions of the country. Four of them (Chiang Mai, Khon Kaen, Bangkok, and Songkhla) have been operating since 1988 and the other (Lampang) since the early 1990s. These registries have published regular 3-year cancer incidence reports since the first in 1993 for the period 1989-1991. The objective of this article is to summarize the figures of cancer incidence in Thailand during 1995-1997. The population of Thailand in 1996, at the middle of the period, was 27 million males and 27.5 million females. Information of cancer cases residing in the five provinces was collected and abstracted from different sources. Age-standardized incidence rate (ASR) of cancer in males and females was calculated for each registry and that for the whole country was estimated using the five registries as representatives for the four geographical regions of Thailand. The estimated number of new cancer cases in 1996 for the whole country was 35,539 men and 38,476 women and the ASRs were 149.2 and 125.0 per 10(5) population in men and women respectively. Cancer incidences greatly differed from region to region. Lung cancer was the commonest in Chiang Mai and Lampang in the Northern region in both sexes. The incidence of liver cancer in Khon Kaen in the Northeastern region outnumbered all the others in both sexes; cholangiocarcinoma was the major type of liver cancer. In Bangkok, lung cancer was the most important cancer in males and breast cancer was in females. Though it was lung and cervix uteri cancer that ranked the first in men and women in Songkhla, the rate of oral and pharyngeal cancer was exceptionally higher than in other registries. The geographical variability in cancer patterns in Thailand reflects exposure of the population to different risk factors unique to the different regions. In the study as a whole, there are some methodological weak points in estimating the ASRs and number of cancer cases for the

  2. Establishment and use of national registries for actinide elements in humans

    International Nuclear Information System (INIS)

    This TECDOC covers all aspects of the establishment and use of registries for actinide elements in Member States. These aspects include assessing the need for such registries; defining scope of the work and developing objectives; administration; organization and staffing; policies; practices; procedures; protocols; registration and enrollment; data collection and evaluation; establishing and analytical laboratory; publication of results and application of findings. Not all aspects will be relevant to all Member States establishing such registries. 1 tab

  3. A most convenient flag : the development of the Singapore ship registry, 1969-82

    OpenAIRE

    Tenold, Stig

    2000-01-01

    The aim of this report is to trace the development of the Singapore Ship Registry, from the introduction of open registry in 1969 until the tightening of registration requirements from the late 1970s. The extraordinary growth of the Singapore merchant marine is analysed in the light of the policies of the Singapore government. In many respects, the opening of the registry mirrors the Singapore economic policies in general, as it facilitated the growth of domestic employment and production, wi...

  4. Pelvic Floor Disorders Registry: Study Design and Outcome Measures.

    Science.gov (United States)

    Weber LeBrun, Emily; Adam, Rony A; Barber, Matthew D; Boyles, Sarah Hamilton; Iglesia, Cheryl B; Lukacz, Emily S; Moalli, Pamela; Moen, Michael D; Richter, Holly E; Subak, Leslee L; Sung, Vivian W; Visco, Anthony G; Bradley, Catherine S

    2016-01-01

    Pelvic floor disorders affect up to 24% of adult women in the United States, and many patients with pelvic organ prolapse (POP) choose to undergo surgical repair to improve their quality of life. While a variety of surgical repair approaches and techniques are utilized, including mesh augmentation, there is limited comparative effectiveness and safety outcome data guiding best practice. In conjunction with device manufacturers, federal regulatory organizations, and professional societies, the American Urogynecologic Society developed the Pelvic Floor Disorders Registry (PFDR) designed to improve the quality of POP surgery by facilitating quality improvement and research on POP treatments. The PFDR will serve as a resource for surgeons interested in benchmarking and outcomes data and as a data repository for Food and Drug Administration-mandated POP surgical device studies. Provider-reported clinical data and patient-reported outcomes will be collected prospectively at baseline and for up to 3 years after treatment. All data elements including measures of success, adverse events, and surgeon characteristics were identified and defined within the context of the anticipated multifunctionality of the registry, and with collaboration from multiple stakeholders. The PFDR will provide a platform to collect high-quality, standardized patient-level data from a variety of nonsurgical (pessary) and surgical treatments of POP and other pelvic floor disorders. Data from this registry may be used to evaluate short- and longer-term treatment outcomes, patient-reported outcomes, and complications, as well as to identify factors associated with treatment success and failure with the overall goal of improving the quality of care for women with these conditions.

  5. Registry of hemophilia and other bleeding disorders in Syria.

    Science.gov (United States)

    Ali, T; Schved, J F

    2012-11-01

    Creating a national registry for bleeding disorders is a major step in establishing a National Hemophilia Care Program in all countries. Creating such a registry which would contain accurate and regularly updated data, including laboratory analysis confirmed by a reference laboratory established at the Syrian Hemophilia Society. Blood samples were drawn and analysed in the Society reference laboratory for the following screening tests: prothrombin time (PT), APTT and coagulation factor assays. Inhibitor detection and VWF RiCof were performed depending on the result of the screening tests. HBs Ag, anti-HCV, anti-HIV 1+2 and syphilis tests were also performed to detect transfusion transmitted agents (TTA). Diagnosis of the bleeding disorder type was confirmed for 760 of these cases. Among the 760 confirmed patients, 82.5% had haemophilia. Among these, 89.6%were haemophilia A; 10.4% were haemophilia B; 8.3% had VWD; 9.2% had other rare bleeding disorders as follows: 1.2% FVII deficiency, 0.7% FV deficiency, 1.8% F1 deficiency, 0.4% FX deficiency, 1.4% platelets dysfunctions (mainly Glanzmann Thrombasthenia) and 3.7% had combined FVIII and FV deficiency. Eighty (21.3%) cases of 375 screened for transfusion transmitted agents were positive for at least one infection: 0.5% were HBsAg positive, 19.7% were anti-HCV positive, 0.8% had combined HBsAg and anti-HCV positivity and 0.3% was anti-Syphilis positive. All patients were negative for HIV1 and HIV2. The preliminary data presented here follow known data on haemophilia A, haemophilia B and VWD disease. This registry will certainly help in improving haemophilia care in Syria.

  6. Commensurate Registry and Chemisorption at a Hetero-organic Interface

    Science.gov (United States)

    Stadtmüller, Benjamin; Sueyoshi, Tomoki; Kichin, Georgy; Kröger, Ingo; Soubatch, Sergey; Temirov, Ruslan; Tautz, F. Stefan; Kumpf, Christian

    2012-03-01

    We present evidence for a partly chemisorptive bonding between single monolayers of copper-II-phthalocyanine (CuPc) and 3,4,9,10-perylene-tetracarboxylic-dianhydride (PTCDA) that are stacked on Ag(111). A commensurate registry between the two molecular layers and the substrate, i.e., a common crystallographic lattice for CuPc and PTCDA films as well as for the Ag(111) surface, indicates that the growth of the upper layer is dominated by the structure of the lower. Photoemission spectroscopy clearly reveals a gradual filling of the lowest unoccupied molecular orbital of PTCDA due to CuPc adsorption, which proves the chemisorptive character.

  7. Commensurate registry and chemisorptions at a hetero-organic interface

    OpenAIRE

    Stadtmüller, B; Sueyoshi, T; Kichin, G.; Kröger, I.; Soubatch, S.; Temirov, R.; Tautz, F. S.; Kumpf, C.

    2012-01-01

    We present evidence for a partly chemisorptive bonding between single monolayers of copper-II-phthalocyanine (CuPc) and 3,4,9,10-perylene-tetracarboxylic-dianhydride (PTCDA) that are stacked on Ag(111). A commensurate registry between the two molecular layers and the substrate, i.e., a common crystallographic lattice for CuPc and PTCDA films as well as for the Ag(111) surface, indicates that the growth of the upper layer is dominated by the structure of the lower. Photoemission spectroscopy c...

  8. Studies based on the Danish Multiple Sclerosis Registry

    DEFF Research Database (Denmark)

    Koch-Henriksen, Nils; Stenager, Egon; Brønnum-Hansen, Henrik

    2011-01-01

    Introduction: This paper reviews the most important articles using data from the Danish Multiple Sclerosis Registry (DMSR) published in the past 25 years. Research topics: These articles include: descriptive epidemiological studies, indicating that the female incidence of multiple sclerosis (MS......) in Denmark has increased considerably; follow-up studies on social events, showing that patients at a high rate lose their working ability and their spouses/partners; mortality studies, demonstrating a considerable excess mortality; cause-of-death studies; comorbidity studies; and, most importantly...

  9. Establishing a Twin Registry in Guinea-Bissau

    DEFF Research Database (Denmark)

    Bjerregaard-Andersen, Morten; Gomes, Margarida A; Joaquím, Luis C;

    2013-01-01

    , diabetes mellitus, metabolic syndrome, and infectious diseases such as HIV, tuberculosis, and malaria. A major focus area is also the etiology of low birth weight and how epigenetic processes might modulate the consequences of low birth weight in Sub-Saharan Africa. For this, monozygotic twin studies...... represent a powerful tool. Though twin studies have been carried out by the Bandim Health Project for more than 30 years, the renewed registry described here was officially established in 2009 and includes both a cohort of newborn twins and a cohort of young and adult twins. Currently more than 1,500 twins...

  10. A registry for exposure and population health in the Altai region affected by fallout from the Semipalatinsk nuclear test site

    Energy Technology Data Exchange (ETDEWEB)

    Shoikhet, Ya.N.; Kiselev, V.I.; Zaitsev, E.V.; Kolyado, I.B.; Konovalov, B.Yu. [Institute of Regional Medico-Ecological Problems, P.O. Box 4664, Barnaul 656043 (Russian Federation); Bauer, S.; Grosche, B.; Burkart, W. [Federal Office of Radiation Protection, Institute of Radiation Hygiene, Oberschleissheim (Germany)

    1999-09-01

    A registry of the rural population in the Altai region exposed to fallout from nuclear tests at the Semipalatinsk test site (STS) was established more than four decades after the first Soviet nuclear explosion on August 29, 1949. Information about individuals living in an exposed and a control area was collected using all available local sources, such as kolkhoz documentation, school registries, medical treatment records and interviews with residents. As a result, a database comprising an exposed group of 39 179 individuals from 53 Altai region villages, 6769 external and 3303 internal controls was compiled. For several settlements, effective dose estimates reached the level of 1.5 Sv, while the average effective dose estimate in the exposed group was 340 mSv. Dosimetric data, vital status information and health records gathered at rayon and village medical facilities are held in the registry. Cause-of-death information for deceased residents is obtained from death registration forms archived at the Altai region vital statistics office. At present, a follow-up of approximately 40% of the population exposed in 1949 has been done. More will be added by searching for migrants to the larger towns of the Altai region, i.e. Barnaul, Rubtsovsk and Biisk. In order to assess the influence of radiation exposure, analytical studies with a case-control design for stomach and lung cancer are currently being prepared. The number of known cases is sufficient to detect an odds ratio of 1.5 at the 95% confidence level. Epidemiological studies in populations affected by fallout from STS may be equally important to the atomic bomb survivors' study for the direct quantification of radiation effects. The range of exposure rates experienced will extend the acute high-dose-rate findings from Hiroshima/Nagasaki towards acute and protracted lower exposures, which are more relevant for radiation protection issues. (orig.)

  11. Animal tumour registry of two provinces in northern Italy: incidence of spontaneous tumours in dogs and cats

    Directory of Open Access Journals (Sweden)

    Carminato Antonio

    2009-10-01

    Full Text Available Abstract Background Cancer is a major cause of death in domestic animals. Furthermore, many forms of pet neoplasm resemble that of their human counterparts in biologic behaviour, pathologic expression, and recognised risk factors. In April 2005, a pilot project was activated so as to establish a dog and cat tumour registry living in the Venice and Vicenza provinces (Veneto Region, north-eastern Italy, with the aim of estimating the incidence of spontaneous tumours. Results Through a telephone survey, the estimates of canine and feline populations of the catchment area turned out to be of 296,318 (CI +/- 30,201 and 214,683 (CI +/- 21,755 subjects, respectively. During the first three years, overall 2,509 canine and 494 feline cases of neoplasia were diagnosed. In dogs, the estimated annual incidence rate (IR per 100,000 dogs for all tumours was 282 in all the catchment area, whereas in cats the IR was much lower (IR = 77. Malignant and benign tumours were equally distributed in male and female dogs, whereas cats had a 4.6-fold higher incidence of malignant tumours than benign. In both dogs and cats, purebreds had an almost 2-fold higher incidence of malignant tumours than mixed breeds. Tumour incidence increased with age in both dog and cat populations. Conclusion This study has provided estimates of incidence of spontaneous neoplasm in companion animals. Further attempts will be made to increase the accuracy in the population size assessment and to ascertain the real gap with the official regional canine demographic registry. Veterinary practitioners may also benefit from the tumour registry insofar they may obtain data for specific breeds, age groups or geographical areas.

  12. Validation of epithelial ovarian cancer and fallopian tube cancer and ovarian borderline tumor data in the Danish Gynecological Cancer Database

    DEFF Research Database (Denmark)

    Petri, Anette Lykke; Kjaer, Susanne Krüger; Christensen, Ib J;

    2009-01-01

    OBJECTIVE: To validate the data on epithelial ovarian cancer, fallopian tube cancer and borderline ovarian tumors registered in the nationwide Danish Gynecological Cancer Database (DGCD) in 2005 and 2006. The DGCD is a multidisciplinary database that contains data for research and quality...... improvement. DESIGN: Comparative registry-based study supplemented with data from medical records. SETTING: Six hospitals in Denmark. PARTICIPANTS: Women registered with epithelial ovarian cancer, fallopian tube cancer and borderline ovarian tumor. MAIN OUTCOME MEASURE: Data completeness and strength of...... validity of ovarian cancer data in the DGCD is sufficient for quality monitoring in gynecological oncology....

  13. Validation of epithelial ovarian cancer and fallopian tube cancer and ovarian borderline tumor data in the Danish Gynecological Cancer Database

    DEFF Research Database (Denmark)

    Petri, A.L.; Kjaer, S.K.; Christensen, I.J.;

    2009-01-01

    OBJECTIVE: To validate the data on epithelial ovarian cancer, fallopian tube cancer and borderline ovarian tumors registered in the nationwide Danish Gynecological Cancer Database (DGCD) in 2005 and 2006. The DGCD is a multidisciplinary database that contains data for research and quality...... improvement. DESIGN: Comparative registry-based study supplemented with data from medical records. SETTING: Six hospitals in Denmark. PARTICIPANTS: Women registered with epithelial ovarian cancer, fallopian tube cancer and borderline ovarian tumor. MAIN OUTCOME MEASURE: Data completeness and strength of...... validity of ovarian cancer data in the DGCD is sufficient for quality monitoring in gynecological oncology Udgivelsesdato: 2009...

  14. Findings on the atopic triad from a Danish twin registry

    DEFF Research Database (Denmark)

    Thomsen, SF; Ulrik, Charlotte Suppli; Kyvik, KO;

    2006-01-01

    OBJECTIVE: To estimate to what extent the same genetic and environmental risk factors influence asthma, hay fever and eczema. DESIGN: From the nationwide Danish Twin Registry, twin cohorts born between 1953 and 1982 were contacted for a questionnaire survey, and a total of 29 183 twin individuals...... role. These results can prove informative when counselling families with atopy, and may furthermore be used to guide the search for pleiotropic genes of importance for these diseases.......OBJECTIVE: To estimate to what extent the same genetic and environmental risk factors influence asthma, hay fever and eczema. DESIGN: From the nationwide Danish Twin Registry, twin cohorts born between 1953 and 1982 were contacted for a questionnaire survey, and a total of 29 183 twin individuals...... in liability between the different diseases were 0.57 (95% CI 0.54-0.59) for asthma and hay fever, 0.40 (95% CI 0.36-0.42) for asthma and eczema, and 0.33 (95% CI 0.29-0.36) for hay fever and eczema. Decomposition of these correlations into their genetic and environmental contributions showed that shared genes...

  15. First annual report of the Austrian CML registry.

    Science.gov (United States)

    Schmidt, Stefan; Wolf, Dominik; Thaler, Josef; Burgstaller, Sonja; Linkesch, Wolfgang; Petzer, Andreas; Fridrik, Michael; Lang, Alois; Agis, Hermine; Valent, Peter; Krieger, Otto; Walder, Alois; Korger, Markus; Schlögl, Ernst; Sliwa, Tamer; Wöll, Ernst; Mitterer, Manfred; Eisterer, Wolfgang; Pober, Michael; Gastl, Günther

    2010-10-01

    The Austrian chronic myeloid leukemia (CML) registry monitors individual disease courses, treatments applied, clinical outcome, and side effects of CML patients on a nationwide basis to provide data on the "real-life" situation and to complement the information and interpretation gained from the selected patient population observed in clinical trials. This report summarizes the Austrian CML registry data as of March 2009. A total of 179 patients have been registered with a median number of 1012 follow-up visits and median observation duration of 20 months. At diagnosis most patients (n = 163) were in chronic phase (early, late, and secondary), whereas only 4 were in advanced phase. A total of 137 patients were treated with tyrosine kinase inhibitors (TKIs), of which 14 received first and second generation TKIs sequentially. Other treatment modalities included chemotherapy or interferon and stem cell transplantation (SCT). Cumulative incidence rates for complete hematological responses (CHR) were 91.6% and 94.4% at 12 and 24 months, respectively, compared to cumulative incidence rates of complete cytogenetical response rates of 64% and 80% at these timepoints. A total of 5 patients progressed from chronic phase to accelerated (n = 3) and blastic phase (n = 2) while receiving imatinib standard dose. Estimated overall survival (OS) rate at 60 months was 90% and progression free survival (PFS) according to European Leukemia Net (ELN) failure definition was 58%. PMID:20936366

  16. Occupational risks of sinonasal cancer in Denmark.

    OpenAIRE

    Olsen, J H

    1988-01-01

    A new comprehensive data linkage system for the detailed investigation of occupational cancer has been established in the Danish Cancer Registry, providing employment histories back to 1964. All 382 cases of cancers of the sinonasal cavities diagnosed between 1970 and 1984 and kept on file in this data linkage system were analysed using standardised proportional incidence ratios (SPIR) to screen for industrial high risk areas for these malignancies in Denmark. Excess risks were confirmed amon...

  17. Cancer incidence in the Love Canal area.

    Science.gov (United States)

    Janerich, D T; Burnett, W S; Feck, G; Hoff, M; Nasca, P; Polednak, A P; Greenwald, P; Vianna, N

    1981-06-19

    Data from the New York Cancer Registry show no evidence for higher cancer rates associated with residence near the Love Canal toxic waste burial site in comparison with the entire state outside of New York City. Rates of liver cancer, lymphoma, and leukemia, which were selected for special attention, were not consistently elevated. Among the other cancers studied, a higher rate was noted only for respiratory cancer, but it was not consistent across age groups and appeared to be related to a high rate for the entire city of Niagara Falls. There was no evidence that the lung cancer rate was associated with the toxic wastes buried at the dump site.

  18. Breast cancer patients survival and associated factors: reported outcomes from the Southern Cancer Registry in Portugal.

    Science.gov (United States)

    André, Maria Rosario; Amaral, Sandra; Mayer, Alexandra; Miranda, Ana

    2014-01-01

    Objectivos: A incidência do cancro da mama em Portugal é inferior à média europeia, sendo, ainda assim, a neoplasia mais frequente na mulher. As taxas de mortalidade por cancro de mama apresentam uma distribuição heterogénea nas diferentes regiões de Portugal. São múltiplos os factores que podem influenciar esta distribuição, incluindo aspectos demográficos e socioeconómicos, características biológicas tumorais, e o acesso aos cuidados de saúde. O objectivo deste estudo é detectar diferenças na sobrevivência do cancro de mama feminino e os principais factores associados. Material e Métodos: Estudo de coorte, de base populacional e orientação retrospectiva, com follow-up. Foram incluídos casos de cancro de mama diagnosticados em 2005 e residentes na região sul de Portugal, tendo os dados sido recolhidos a partir da base de dados do Registo Oncológico Regional Sul (ROR-Sul) e complementados com dados dos processos clínicos. Resultados: Foram incluídos neste estudo 1 354 doentes. Observaram-se as seguintes variações geográficas: na distribuição etária, com uma população envelhecida no Alentejo; na distribuição de sub-tipos tumorais, com uma maior incidência de tumores HER2- positivo no Algarve e maior incidência de tumores HER2-negativo na Região Autónoma da Madeira. A sobrevivência global estimada aos 5 anos foi de 80%, com uma associação significativa com o estadio, receptores hormonais e status HER2. Não foram identificadas diferenças na sobrevivência entre mulheres residentes em regiões geográficas distintas. Discussão: Apesar das diferenças observadas na distribuição etária e de sub-tipos tumorais entre regiões geográficas, os nossos resultados não suportam a existência de discrepâncias na sobrevivência do cancro de mama entre estas regiões. As características biológicas tumorais parecem ser os principais factores associados à sobrevivência do cancro de mama feminino na nossa população. Conclusões: O nosso estudo confirma a associação entre a sobrevivência e o estadio, receptores hormonais e status HER2. No entanto, não foram observadas diferenças na sobrevivência entre diferentes regiões geográficas de residência.

  19. [Epidemiological cancer data online: an overview of information service in Germany and Europe].

    Science.gov (United States)

    Schönfeld, I; Kraywinkel, K

    2014-01-01

    Finding reliable data about cancer epidemiology on the World Wide Web is not an easy task. Information is often scattered, and sources are not always clear. This article gives a short overview of the most important websites that provide reliable data for Germany and Europe. Four internet sites are presented: The German Centre for Cancer Registry Data (ZfKD), the Association of Population-Based Cancer Registries in Germany (GEKID), and two different websites created by the International Agency for Research on Cancer (IARC). In combination, they provide comprehensive information about the distribution of cancer in Germany and Europe. PMID:24357168

  20. Acromegaly according to the Danish National Registry of Patients: how valid are ICD diagnoses and how do patterns of registration affect the accuracy of registry data?

    OpenAIRE

    Dal J; Skou N; Nielsen EH; Jørgensen JOL; Pedersen L

    2014-01-01

    Jakob Dal,1 Nikolaj Skou,1 Eigil Husted Nielsen,2 Jens Otto Lunde Jørgensen,1 Lars Pedersen3 1Department of Endocrinology, Aarhus University Hospital, Aarhus, 2Department of Endocrinology, Aalborg University Hospital, Aalborg, 3Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Background: The incidence of acromegaly is uncertain, since population-based studies are few. In the absence of a specific acromegaly registry, the Danish National Registry of ...

  1. Epidemiology of Cancers in Kashmir, India: An Analysis of Hospital Data

    OpenAIRE

    Qurieshi, Mariya A.; Khan, S. M. Salim; Muneer A. Masoodi; Qurieshi, Uruj; Ain, Quratul; Jan, Yasmeen; Haq, Inaamul; Ahmad, Sheikh Zahoor

    2016-01-01

    Cancer is a leading cause of mortality and morbidity in the world. The aim of the present study was to measure the pattern of different cancers in Kashmir, India, a cancer belt with peculiar cancer profile. A hospital based cancer registry was started by the Department of Community Medicine, Government Medical College, Srinagar, in January 2006, wherein information was collected from cancer patients who were diagnosed and treated in the hospital. Data has been analysed for a period extending ...

  2. Cancer risks among residents of Manitoba Indian reserves, 1970-79

    OpenAIRE

    1985-01-01

    A descriptive epidemiologic study of malignant neoplasms among residents of Indian reserves in Manitoba from 1970 to 1979 based on the Manitoba Cancer Registry revealed an unusual pattern. There was a greater risk for kidney cancer in both sexes and for gallbladder and invasive cervical cancer in women. The risk was reduced, however, for cancer of the lung in men and of the breast in women, cancers with a high incidence in the general Canadian population. Overall the risk for cancer was lower...

  3. CANCER

    Directory of Open Access Journals (Sweden)

    N. Kavoussi

    1973-09-01

    Full Text Available There are many carcinogenetic elements in industry and it is for this reason that study and research concerning the effect of these materials is carried out on a national and international level. The establishment and growth of cancer are affected by different factors in two main areas:-1 The nature of the human or animal including sex, age, point and method of entry, fat metabolism, place of agglomeration of carcinogenetic material, amount of material absorbed by the body and the immunity of the body.2 The different nature of the carcinogenetic material e.g. physical, chemical quality, degree of solvency in fat and purity of impurity of the element. As the development of cancer is dependent upon so many factors, it is extremely difficult to determine whether a causative element is principle or contributory. Some materials are not carcinogenetic when they are pure but become so when they combine with other elements. All of this creates an industrial health problem in that it is almost impossible to plan an adequate prevention and safety program. The body through its system of immunity protects itself against small amounts of carcinogens but when this amount increases and reaches a certain level the body is not longer able to defend itself. ILO advises an effective protection campaign against cancer based on the Well –equipped laboratories, Well-educated personnel, the establishment of industrial hygiene within factories, the regular control of safety systems, and the implementation of industrial health principles and research programs.

  4. 77 FR 7167 - Global Rare Diseases Patient Registry and Data Repository (GRDR) Notice and Request for...

    Science.gov (United States)

    2012-02-10

    ... HUMAN SERVICES National Institutes of Health Global Rare Diseases Patient Registry and Data Repository (GRDR) Notice and Request for Information (RFI) SUMMARY: The Office of Rare Diseases Research (ORDR), an... Global Rare Diseases Patient Registry and Data Repository (GRDR), and to submit background...

  5. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries.

    Science.gov (United States)

    Codreanu, Catalin; Damjanov, Nemanja

    2015-01-01

    Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA). Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs) and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols) often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs) and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]). The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. PMID:25670881

  6. The Danish Registry on Regular Dialysis and Transplantation: completeness and validity of incident patient registration

    DEFF Research Database (Denmark)

    Hommel, Kristine; Rasmussen, Søren; Madsen, Mette;

    2010-01-01

    The Danish National Registry on Regular Dialysis and Transplantation (NRDT) provides systematic information on the epidemiology and treatment of end-stage chronic kidney disease in Denmark. It is therefore of major importance that the registry is valid and complete. The aim of the present study...

  7. Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research

    Science.gov (United States)

    Rider, Lisa G.; Dankó, Katalin; Miller, Frederick W.

    2016-01-01

    Purpose of review Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers’ collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes. Recent findings We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation. Summary Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways. PMID:25225838

  8. 77 FR 16471 - Pipeline Safety: Implementation of the National Registry of Pipeline and Liquefied Natural Gas...

    Science.gov (United States)

    2012-03-21

    ...: Implementation of the National Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and... registry of pipeline and liquefied natural gas operators. This notice provides updates to the information... the Federal Register (75 FR 72878) titled: ``Pipeline Safety: Updates to Pipeline and...

  9. Treatment of autoinflammatory diseases: results from the Eurofever Registry and a literature review

    NARCIS (Netherlands)

    Haar, N. Ter; Lachmann, H.; Ozen, S.; Woo, P.; Uziel, Y.; Modesto, C.; Kone-Paut, I.; Cantarini, L.; Insalaco, A.; Neven, B.; Hofer, M.; Rigante, D.; Al-Mayouf, S.; Touitou, I.; Gallizzi, R.; Papadopoulou-Alataki, E.; Martino, S.; Kuemmerle-Deschner, J.; Obici, L.; Iagaru, N.; Simon, A.; Nielsen, S.; Martini, A.; Ruperto, N.; Gattorno, M.; Frenkel, J.

    2013-01-01

    OBJECTIVE: To evaluate the response to treatment of autoinflammatory diseases from an international registry and an up-to-date literature review. METHODS: The response to treatment was studied in a web-based registry in which clinical information on anonymised patients with autoinflammatory diseases

  10. 76 FR 72424 - Submission for OMB Review; Comment Request Information Program on the Genetic Testing Registry

    Science.gov (United States)

    2011-11-23

    ... information collection was previously published in the Federal Register on July 27, 2011, (76 FR 44937) and... Program on the Genetic Testing Registry AGENCY: National Institutes of Health (NIH), PHS, DHHS. ACTION... control number. Proposed Collection: Title: The Genetic Testing Registry; Type of Information...

  11. An evolution of trauma care evaluation: A thesis on trauma registry and outcome prediction models

    NARCIS (Netherlands)

    P. Joosse

    2013-01-01

    Outcome prediction models play an invaluable role in the evaluation and improvement of modern trauma care. Trauma registries underlying these outcome prediction models need to be accurate, complete and consistent. This thesis focused on the opportunities and limitations of trauma registries and outc

  12. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Science.gov (United States)

    2010-07-01

    ... 36 Parks, Forests, and Public Property 3 2010-07-01 2010-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  13. 75 FR 29350 - Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as...

    Science.gov (United States)

    2010-05-25

    ... HUMAN SERVICES Food and Drug Administration Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as Established by the Food and Drug Administration Amendments Act of 2007... information to the industry in complying with the Reportable Food Registry requirements prescribed by the...

  14. Obesity is associated with increased risk of invasive penile cancer

    OpenAIRE

    Barnes, Kerri T.; McDowell, Bradley D.; Button, Anna; Smith, Brian J.; Lynch, Charles F.; Gupta, Amit

    2016-01-01

    Background To validate the association between obesity and penile cancer at a population level, we conducted a matched case–control study linking the Iowa Department of Motor Vehicles Drivers’ License Database (DLD) with cancer surveillance data collected by the State Health Registry of Iowa (SHRI). Methods All men diagnosed with invasive penile squamous cell carcinoma from 1985 to 2010 were identified by SHRI. Two hundred sixty-six cancer cases and 816 cancer-free male controls, selected fro...

  15. Gastric cancer in Scotland: changing epidemiology, unchanging workload.

    OpenAIRE

    Sedgwick, D M; Akoh, J A; Macintyre, I. M.

    1991-01-01

    OBJECTIVE--To determine the changes in incidence of and mortality from gastric cancer in Scotland between 1978 and 1987 and in the operative workload in Lothian between 1979 and 1988. DESIGN--Analysis of national incidence statistics for gastric cancer derived from the Scottish national cancer registry, deaths from gastric cancer recorded by the registrar general for Scotland, and Lothian surgical audit data. SETTING--Scotland and Lothian Health Board area. PATIENTS--Patients in Scotland with...

  16. Aneurysm Study of Pipeline in an Observational Registry (ASPIRe)

    Science.gov (United States)

    Kallmes, David F.; Brinjikji, Waleed; Boccardi, Edoardo; Ciceri, Elisa; Diaz, Orlando; Tawk, Rabih; Woo, Henry; Jabbour, Pascal; Albuquerque, Felipe; Chapot, Rene; Bonafe, Alain; Dashti, Shervin R.; Almandoz, Josser E. Delgado; Given, Curtis; Kelly, Michael E.; Cross, DeWitte T.; Duckwiler, Gary; Razack, Nasser; Powers, Ciaran J.; Fischer, Sebastian; Lopes, Demetrius; Harrigan, Mark R.; Huddle, Daniel; Turner, Raymond; Zaidat, Osama O.; Defreyne, Luc; Pereira, Vitor Mendes; Cekirge, Saruhan; Fiorella, David; Hanel, Ricardo A.; Lylyk, Pedro; McDougall, Cameron; Siddiqui, Adnan; Szikora, Istvan; Levy, Elad

    2016-01-01

    Background and Objective Few prospective studies exist evaluating the safety and efficacy of the Pipeline Embolization Device (PED) in the treatment of intracranial aneurysms. The Aneurysm Study of Pipeline In an observational Registry (ASPIRe) study prospectively analyzed rates of complete aneurysm occlusion and neurologic adverse events following PED treatment of intracranial aneurysms. Materials and Methods We performed a multicenter study prospectively evaluating patients with unruptured intracranial aneurysms treated with PED. Primary outcomes included (1) spontaneous rupture of the Pipeline-treated aneurysm; (2) spontaneous nonaneurysmal intracranial hemorrhage (ICH); (3) acute ischemic stroke; (4) parent artery stenosis, and (5) permanent cranial neuropathy. Secondary endpoints were (1) treatment success and (2) morbidity and mortality at the 6-month follow-up. Vascular imaging was evaluated at an independent core laboratory. Results One hundred and ninety-one patients with 207 treated aneurysms were included in this registry. The mean aneurysm size was 14.5 ± 6.9 mm, and the median imaging follow-up was 7.8 months. Twenty-four aneurysms (11.6%) were small, 162 (78.3%) were large and 21 (10.1%) were giant. The median clinical follow-up time was 6.2 months. The neurological morbidity rate was 6.8% (13/191), and the neurological mortality rate was 1.6% (3/191). The combined neurological morbidity/mortality rate was 6.8% (13/191). The most common adverse events were ischemic stroke (4.7%, 9/191) and spontaneous ICH (3.7%, 7/191). The complete occlusion rate at the last follow-up was 74.8% (77/103). Conclusions Our prospective postmarket study confirms that PED treatment of aneurysms in a heterogeneous patient population is safe with low rates of neurological morbidity and mortality. Patients with angiographic follow-up had complete occlusion rates of 75% at 8 months.

  17. Identification of Associations Between Prescribed Medications and Cancer

    DEFF Research Database (Denmark)

    Pottegård, Anton; Friis, Søren; Christensen, René dePont;

    2016-01-01

    PURPOSE: We present a systematic screening for identifying associations between prescribed drugs and cancer risk using the high quality Danish nationwide health registries. METHODS: We identified all patients (cases) with incident cancer in Denmark during 2000-2012 (n=278,485) and matched each ca...

  18. Parental Exposure to Pesticides and Childhood Brain Cancer: U.S. Atlantic Coast Childhood Brain Cancer Study

    OpenAIRE

    Shim, Youn K.; Mlynarek, Steven P.; van Wijngaarden, Edwin

    2009-01-01

    Background The etiology of childhood brain cancer remains largely unknown. However, previous studies have yielded suggestive associations with parental pesticide use. Objectives We aimed to evaluate parental exposure to pesticides at home and on the job in relation to the occurrence of brain cancer in children. Methods We included 526 one-to-one–matched case–control pairs. Brain cancer cases were diagnosed at < 10 years of age, and were identified from statewide cancer registries of four U.S....

  19. Predictive value of stroke and transient ischemic attack discharge diagnoses in the Danish National Registry of Patients

    DEFF Research Database (Denmark)

    Johnsen, Søren P; Overvad, Kim; Sørensen, Henrik Toft;

    2002-01-01

    We examined the predictive value of the discharge diagnoses of stroke and transient ischemic attack (TIA) in The National Registry of Patients (NRP) for participants in the Danish cohort study “Diet, Cancer, and Health.” We retrieved all probable incident registered cases of stroke and TIA, i...... and intracerebral hemorrhage were confirmed in 14 of 29 cases (48.3%, 95% CI: 29.4–67.5%), and 23 of 35 cases (65.7%, 95% CI: 47.8–80.9%), respectively. By contrast, ischemic stroke and unspecified stroke were confirmed in 99 of 113 cases (87.6%, 95% CI: 80.1–93.1%) and 152 of 200 cases (76.0%, 95% CI: 69...

  20. Use of azathioprine and the risk of cancer in inflammatory bowel disease

    DEFF Research Database (Denmark)

    Pasternak, Björn; Svanström, Henrik; Schmiegelow, Kjeld;

    2013-01-01

    %) used azathioprine) in Denmark from 1997 to 2008. We linked registry data on filled drug prescriptions, cancer diagnoses, and covariates and compared rates of overall incident cancer and cancer subgroups between users and nonusers of azathioprine, adjusting for propensity scores. During a median 7...

  1. Breast cancer risk associated with different HRT formulations: a register-based case-control study

    OpenAIRE

    Thai Do; Möhner Sabine; Heinemann Lothar AJ; Dinger Juergen C; Assmann Anita

    2006-01-01

    Abstract Background Previous epidemiological studies have inconsistently shown a modestly increased breast cancer risk associated with hormone replacement therapy (HRT). Limited information is available about different formulations – particularly concerning different progestins. Methods A case-control study was performed within Germany in collaboration with regional cancer registries and tumor centers. Up to 5 controls were matched breast cancer cases. Conditional logistic regression analysis...

  2. Stage-specific survival of epithelial cancers in North-Holland/Flevoland, The Netherlands

    NARCIS (Netherlands)

    Visser, O.; Leeuwen, van F.E.

    2005-01-01

    While stage is the most important factor for determining cancer survival, population-based survival data according to stage are rarely presented. We present such data for a large population diagnosed with cancer in the area covered by the Amsterdam Cancer Registry for the period 1989-2001 (n=108,251

  3. Population-based utilization of radiation therapy by a Canadian breast cancer cohort

    OpenAIRE

    Mittmann, N; Seung, S.J.; Liu, N.; Porter, J.; Saskin, R.; Hoch, J.S.; Evans, W.K.; Leighl, N.B.; Trudeau, M.; Earle, C.C.

    2014-01-01

    We examined trends in radiation therapy (rt) utilization by a population-based breast cancer cohort in Ontario. The provincial cancer registry provided a breast cancer cohort based on diagnosis dates from April 1, 2005, to March 31, 2010. Staging information was also available. The cohort was then linked, by encrypted health card number, to linkable administrative datasets, including rt utilization.

  4. Cancer incidence among patients with alcohol use disorders--long-term follow-up

    DEFF Research Database (Denmark)

    Thygesen, Lau Caspar; Mikkelsen, Pernille; Andersen, Tina Veje;

    2009-01-01

    1954 to 1992. The cancer incidence until 1999 of the patients and the general Danish population was obtained through linkage with the Danish Cancer Registry. The incidence rates were standardized (SIR) according to sex, age and calendar time. RESULTS: A total of 2145 men developed cancer compared...

  5. Widening socio-economic inequalities in oral cancer incidence in Scotland, 1976–2002

    OpenAIRE

    Conway, D.I.; Brewster, D H; McKinney, P. A.; Stark, J.; McMahon, A.D.; Macpherson, L.M.D.

    2007-01-01

    Oral cancer incidence was investigated among 10 857 individuals using Scottish Cancer Registry data. Since 1980 the incidence of oral cancer among males in Scotland has significantly increased, the rise occurring almost entirely in the most deprived areas of residence.

  6. Validity of the recorded codes of gonadotropin-releasing hormone agonist treatment and orchiectomies in the Danish National Patient Registry

    Directory of Open Access Journals (Sweden)

    Jespersen CG

    2012-06-01

    Full Text Available Christina Gade Jespersen,1,2 Michael Borre,1 Mette Nørgaard21Department of Urology, Aarhus University Hospital, Aarhus, Denmark; 2Department of Clinical Epidemiology, Institute of Clinical Medicine, Aarhus University Hospital, Aarhus, DenmarkPurpose: Large-scale observational studies based on existing medical databases may have an important role in studies of long-term effects of different treatments in prostate cancer patients if the coding of the treatment is valid. We therefore estimated the positive predictive value (PPV and negative predictive value (NPV of hospital codes for gonadotropin-releasing hormone (GnRH agonist treatment and orchiectomies in the Danish National Patient Registry (DNPR.Patients and methods: From Danish prostate cancer patients we selected 100 patients who were registered as users of GnRH agonists, 100 patients who were registered as nonusers of GnRH agonists, 50 patients who were registered as bilateral orchidectomized, and 50 patients who were not registered as orchidectomized in the DNPR between January 1, 2002 and December 31, 2008. From the patients' medical files we recorded codes for GnRH agonist treatment and orchiectomies, including dates of treatment from date of first prostate cancer diagnosis and onward.Results: The PPV of GnRH agonist treatment coding in the DNPR was 93% (95% confidence interval [CI]: 86.1–97.1, and the NPV was 94% (95% CI: 87.4–97.8. Both the PPV and NPV of orchiectomy coding in the DNPR were 100% (97.5% CI: 92.9–100.Conclusion: We measured the validity of codes for GnRH agonist treatment and orchiectomies in the DNPR among prostate cancer patients and found high PPV and NPV. Thus, the DNPR remains a valuable tool for clinical epidemiological studies of GnRH agonist treatment and orchiectomies in the treatment of prostate cancer.Keywords: prostate cancer, orchiectomy, positive predictive value, negative predictive value

  7. The Nanomaterial Registry: facilitating the sharing and analysis of data in the diverse nanomaterial community

    Directory of Open Access Journals (Sweden)

    Ostraat ML

    2013-09-01

    Full Text Available Michele L Ostraat, Karmann C Mills, Kimberly A Guzan, Damaris MurryRTI International, Durham, NC, USAAbstract: The amount of data being generated in the nanotechnology research space is significant, and the coordination, sharing, and downstream analysis of the data is complex and consistently deliberated. The complexities of the data are due in large part to the inherently complicated characteristics of nanomaterials. Also, testing protocols and assays used for nanomaterials are diverse and lacking standardization. The Nanomaterial Registry has been developed to address such challenges as the need for standard methods, data formatting, and controlled vocabularies for data sharing. The Registry is an authoritative, web-based tool whose purpose is to simplify the community's level of effort in assessing nanomaterial data from environmental and biological interaction studies. Because the registry is meant to be an authoritative resource, all data-driven content is systematically archived and reviewed by subject-matter experts. To support and advance nanomaterial research, a set of minimal information about nanomaterials (MIAN has been developed and is foundational to the Registry data model. The MIAN has been used to create evaluation and similarity criteria for nanomaterials that are curated into the Registry. The Registry is a publicly available resource that is being built through collaborations with many stakeholder groups in the nanotechnology community, including industry, regulatory, government, and academia. Features of the Registry website (https://www.nanomaterialregistry.org/ currently include search, browse, side-by-side comparison of nanomaterials, compliance ratings based on the quality and quantity of data, and the ability to search for similar nanomaterials within the Registry. This paper is a modification and extension of a proceedings paper for the Institute of Electrical and Electronics Engineers.Keywords: nanoinformatics

  8. BioShaDock: a community driven bioinformatics shared Docker-based tools registry.

    Science.gov (United States)

    Moreews, François; Sallou, Olivier; Ménager, Hervé; Le Bras, Yvan; Monjeaud, Cyril; Blanchet, Christophe; Collin, Olivier

    2015-01-01

    Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community. PMID:26913191

  9. Alcohol intake and cigarette smoking and risk of a contralateral breast cancer: The Women's Environmental Cancer and Radiation Epidemiology Study

    DEFF Research Database (Denmark)

    Knight, J.A.; Bernstein, L.; Largent, J.;

    2009-01-01

    Study (1985-2001), the roles of alcohol and smoking were examined in 708 women with asynchronous contralateral breast cancer (cases) compared with 1,399 women with unilateral breast cancer (controls). Cases and controls aged less than 55 years at first breast cancer diagnosis were identified from 5...... population-based cancer registries in the United States and Denmark. Controls were matched to cases on birth year, diagnosis year, registry region, and race and countermatched on radiation treatment. Risk factor information was collected by telephone interview. Rate ratios and 95% confidence intervals were...... to asynchronous contralateral breast cancer. In this, the largest study of asynchronous contralateral breast cancer to date, alcohol is a risk factor for the disease, as it is for a first primary breast cancer Udgivelsesdato: 2009/4/15...

  10. Validating the use of Medicare Australia billing data to examine trends in skin cancer

    OpenAIRE

    Eshini Perera; Neiraja Gnaneswaran; Marlon Perera; Rodney Sinclair

    2015-01-01

    Background:  Epidemiological data surrounding non-melanomatous skin cancer (NMSC) is highly variable, in part due to the lack of government cancer registries. Several studies employ the use of Medical Australia (MA) rebate data in assessing such trends, the validity of which has not been studied in the past. Conversely, melanoma skin cancer is a notifiable disease, and thus, MA and cancer registry data is readily available. The aim of the current study is to assess the use of MA for epidemiol...

  11. The European Cancer Observatory: A new data resource.

    Science.gov (United States)

    Steliarova-Foucher, Eva; O'Callaghan, Mark; Ferlay, Jacques; Masuyer, Eric; Rosso, Stefano; Forman, David; Bray, Freddie; Comber, Harry

    2015-06-01

    Population-based cancer registries provide indispensable information on cancer incidence and survival, which cannot be obtained by any other means. It is clear that complete and effective use of these data is essential for cancer control, but sharing this information in a uniform, timely and user-friendly manner has been somewhat limited up to now. The European Cancer Observatory (ECO, http://eco.iarc.fr) has been developed in the framework of the EUROCOURSE project (EUROpe against Cancer: Optimisation of Use of Registries for Scientific Excellence in Research) as a comprehensive resource combining all the information currently available in Europe on cancer incidence, mortality, survival and prevalence. The website provides analytical and presentation tools to examine national estimates for 2012 in 40 European countries (EUCAN), data for 130 national or sub-national areas covered by cancer registries for up to 60 years, until 2011 (EUREG) and a planned mechanism for data download (European Cancer Incidence and Mortality (EUROCIM)). The generated statistics outline the considerable variability across Europe in the rates of all major cancer types and help identify key concerns that need to be addressed by public health policies e.g. the unprecedented rise of lung cancer incidence in women with its full impact expected within a decade or so. The support, maintenance and further development of the ECO website should be a high priority for European cancer policymakers, to continue providing this unique information to health professionals, researchers and the general public in Europe and beyond.

  12. Comparison of breast cancer survival in two populations: Ardabil, Iran and British Columbia, Canada

    OpenAIRE

    Babaei Masoud; Nouraie Mehdi; Ghorbani Anahita; Bashash Morteza; Bajdik Chris; Hislop T Gregory; Sadjadi Alireza; Malekzadeh Reza; Yavari Parvin

    2009-01-01

    Abstract Background Patterns in survival can provide information about the burden and severity of cancer, help uncover gaps in systemic policy and program delivery, and support the planning of enhanced cancer control systems. The aim of this paper is to describe the one-year survival rates for breast cancer in two populations using population-based cancer registries: Ardabil, Iran, and British Columbia (BC), Canada. Methods All newly diagnosed cases of female breast cancer were identified in ...

  13. Using NLP to identify cancer cases in imaging reports drawn from radiology information systems.

    Science.gov (United States)

    Patrick, Jon; Asgari, Pooyan; Li, Min; Nguyen, Dung

    2013-01-01

    A Natural Language processing (NLP) classifier has been developed for the Victorian and NSW Cancer Registries with the purpose of automatically identifying cancer reports from imaging services, transmitting them to the Registries and then extracting pertinent cancer information. Large scale trials conducted on over 40,000 reports show the sensitivity for identifying reportable cancer reports is above 98% with a specificity above 96%. Detection of tumour stream, report purpose, and a variety of extracted content is generally above 90% specificity. The differences between report layout and authoring strategies across imaging services appear to require different classifiers to retain this high level of accuracy. Linkage of the imaging data with existing registry records (hospital and pathology reports) to derive stage and recurrence of cancer has commenced and shown very promising results. PMID:23823294

  14. Urologic cancer in China.

    Science.gov (United States)

    Pang, Cheng; Guan, Youyan; Li, Hongbo; Chen, Wanqing; Zhu, Gang

    2016-06-01

    Cancer remains to be the second most common cause of death, and its incidence and mortality rates are increasing in China. According to the 2015 National Central Cancer Registry (NCCR) of China, the incidence of bladder cancer and prostate cancer ranked sixth and seventh, respectively, in male cancers. The majority of prostate cancer patients were diagnosed at an advanced stage. Early diagnosis of prostate cancer is the key to improve prostate cancer survival in China. Radical prostatectomy or radical radiotherapy is the main treatment for localized prostate cancer, and a comprehensive therapy based on androgen deprivation therapy is the treatment for advanced disease. The most common histologic types of bladder cancer in China were urothelial carcinoma, followed by adenocarcinoma and squamous carcinoma. The majority of patients were diagnosed using white-light cystoscopy with biopsy. Fluorescence and narrow-band imaging cystoscopy had additional detection rates and are becoming more popular. Following Chinese guidelines, most non-muscle invasive bladder cancer patients were treated with diagnostic transurethral resection and more than half of the muscle invasive bladder cancer patients were treated with radical cystectomy. Due to the increased detection rate of kidney tumors by ultrasound in physical examination, the number of incidentally diagnosed renal cell carcinoma has increased. Localized kidney cancers are more and more often treated by nephron-sparing surgery. Radical nephrectomy is still the main treatment option for patients with locally advanced renal cell carcinoma. Both laparoscopic and robotic-assisted laparoscopic surgeries have been used in big medical centers. Both testicular cancer and penile cancer have lower incidence levels than that in Europe. As we have an enormous population base, the absolute patient number is big. The diagnosis and treatment follows the Chinese guidelines. In China, both medical professionals and public should concern

  15. United States Transuranium and Uranium Registries. Annual report February 1, 2001--January 31, 2002

    Energy Technology Data Exchange (ETDEWEB)

    Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed)

    2002-07-01

    This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed.

  16. [Considerations on what we can (and what we should not) ask to registries].

    Science.gov (United States)

    Addis, Antonio; Berti, Elena; De Palma, Rossana; Fiori, Giovanni; Papini, Donato; Traversa, Giuseppe

    2015-09-01

    This article presents a summary of the discussion which took place during the works of PRIER II in the session dedicated to the methodology of registries. Following a thorough analysis of the possible methods and the limits which deal with the collection of clinical data through the registries, the different points of view were compared, perhaps the most relevant, related to this activity. All this has been done by taking advantage by the possibility to observe aspects from different points of view. In particular, the exercise considered those who have to deal with the methodological aspects of the registries as an operator of public health or as a private operator who creates services for companies. The final goal, again, was to line up a few essential points accompanied by reasoning and comments useful to anyone who wants to address the issue of registries from the methodological point of view. PMID:26418506

  17. The Danish Registry on Regular Dialysis and Transplantation:completeness and validity of incident patient registration

    DEFF Research Database (Denmark)

    Hommel, Kristine; Rasmussen, Søren; Madsen, Mette;

    2010-01-01

    BACKGROUND: The Danish National Registry on Regular Dialysis and Transplantation (NRDT) provides systematic information on the epidemiology and treatment of end-stage chronic kidney disease in Denmark. It is therefore of major importance that the registry is valid and complete. The aim...... of the present study was to evaluate the registration of incident patients on chronic renal replacement therapy (RRT). METHODS: Incident patients on chronic RRT in the period 2001-2004 were identified in NRDT and in the National Patient Registry, which contains information on hospital admissions and treatments....... In the National Patient Registry, identification of patients was as follows: patients receiving the procedure of dialysis during a minimum of 90 days and for a minimum of 12 times or the procedure of renal transplantation. Only patients with at least 2 years of dialysis-free interval before and never being...

  18. 77 FR 22284 - Notice of Establishment of a Veterinary Services Stakeholder Registry

    Science.gov (United States)

    2012-04-13

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF AGRICULTURE Animal and Plant Health Inspection Service Notice of Establishment of a Veterinary Services Stakeholder... Inspection Service (APHIS) has established a Veterinary Services (VS) Stakeholder Registry, an...

  19. United States Transuranium and Uranium Registries. Annual report February 1, 2001 - January 31, 2002

    International Nuclear Information System (INIS)

    This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed

  20. The Global Registry of Biodiversity Repositories: A Call for Community Curation

    Science.gov (United States)

    Miller, Scott E.; Trizna, Michael G.; Graham, Eileen; Crane, Adele E.

    2016-01-01

    Abstract The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource. PMID:27660523

  1. Environmental Protection Agency (EPA) Facility Registry Service (FRS) Wastewater Treatment Plants

    Data.gov (United States)

    Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...

  2. Analysis of Existing Guidelines for the Systematic Planning Process of Clinical Registries.

    Science.gov (United States)

    Löpprich, Martin; Knaup, Petra

    2016-01-01

    Clinical registries are a powerful method to observe the clinical practice and natural disease history. In contrast to clinical trials, where guidelines and standardized methods exist and are mandatory, only a few initiatives have published methodological guidelines for clinical registries. The objective of this paper was to review these guidelines and systematically assess their completeness, usability and feasibility according to a SWOT analysis. The results show that each guideline has its own strengths and weaknesses. While one supports the systematic planning process, the other discusses clinical registries in great detail. However, the feasibility was mostly limited and the special requirements of clinical registries, their flexible, expandable and adaptable technological structure was not addressed consistently. PMID:27577423

  3. Analysis of Existing Guidelines for the Systematic Planning Process of Clinical Registries.

    Science.gov (United States)

    Löpprich, Martin; Knaup, Petra

    2016-01-01

    Clinical registries are a powerful method to observe the clinical practice and natural disease history. In contrast to clinical trials, where guidelines and standardized methods exist and are mandatory, only a few initiatives have published methodological guidelines for clinical registries. The objective of this paper was to review these guidelines and systematically assess their completeness, usability and feasibility according to a SWOT analysis. The results show that each guideline has its own strengths and weaknesses. While one supports the systematic planning process, the other discusses clinical registries in great detail. However, the feasibility was mostly limited and the special requirements of clinical registries, their flexible, expandable and adaptable technological structure was not addressed consistently.

  4. The Global Registry of Biodiversity Repositories: A Call for Community Curation.

    Science.gov (United States)

    Schindel, David E; Miller, Scott E; Trizna, Michael G; Graham, Eileen; Crane, Adele E

    2016-01-01

    The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource. PMID:27660523

  5. [Development of a drug information registry system in Mexico].

    Science.gov (United States)

    Ortiz, A

    1989-12-01

    Mexico's need for uniform information about drug abuse led to the creation of an information collection system in 1986. This system, known as the System for Registry of Information on Drugs (SRID), currently covers the Mexico City metropolitan area; plans call for it to be expanded in two phases--so as to provide coverage first of the states near the US border and those with substantial tourism, and then to cover the nation as a whole. This article describes the data collection procedures used and the results of the four SRID assessments conducted in the Mexico City area from mid-1986 through mid-1988. These results indicate there were about nine male drug abusers in this period for every female; that drug use typically began young; that the drugs most commonly abused were marijuana, inhalants, alcohol, tobacco, and tranquilizers; that cocaine use was limited but apparently increasing; and that most of the drug abusers interviewed had not completed secondary school, were not in school at the time interviewed, and had relatively low socioeconomic status. PMID:2532908

  6. Chevron Canada Resources voluntary challenge and registry 2000 annual report

    International Nuclear Information System (INIS)

    Chevron Canada Resources has been a registered member of the Voluntary Challenge and Registry (VCR) program since 1995. During the course of 2000, Chevron Canada Resources continued in its efforts toward raising awareness at the employee level concerning the program while it strove to maintain the system previously established called Protecting People and the Environment. Some of the successes experienced by the company in 2000 were: a 6 per cent reduction in flare gas volumes per unit production from the levels of 1990, a 0.3 per cent reduction in total carbon dioxide emissions from the levels of 1999, the elimination of 4,317 tonnes of carbon dioxide equivalent emissions, and the reduction, in 2000, of total carbon dioxide emissions to below year 2001 projections. The forecast for carbon dioxide emissions in 2001 by Chevron Canada Resources is 108 per cent of 1990 levels, which can be explained by a significant increase in more energy intensive products and increasing water volumes in maturing fields. The following initiatives are being implemented to support further improvement in energy and emissions management and the reduction of carbon dioxide emissions: (1) training programs for employees in design and operations, (2) the identification of opportunities within facilities for optimization of energy consumption, (3) a contribution to research and development programs in emissions control and energy efficiency, and (4) the continuous investigating of alternative practices to reduce greenhouse gas emissions and the conservation of resources. 2 tabs., 8 figs

  7. Optic neuritis: Experience from a south Indian demyelinating disease registry

    Directory of Open Access Journals (Sweden)

    Lekha Pandit

    2012-01-01

    Full Text Available Background: Natural history of optic neuritis (OPN has not been studied in India. Aim: To study consecutive patients with optic neuritis as the initial manifestation of the neurologic disease and with disease duration of 3 or more years registered in the Mangalore Demyelinating Disease Registry. Materials and Methods: The study included 59 patients with a primary diagnosis of optic neuritis (confirmed by either an ophthalmologist or a neurologist or both. All the patients were investigated and followed-up in the clinic. Results: During the follow-up of the 59 patients, 29 (49% patients developed multiple sclerosis (MS; 3 (5% patients neuromyelitis optica (NMO; and 13 (22% patients chronic relapsing inflammatory optic neuritis (CRION, while the remaining 14 (24% did not either progress or relapse, monophasic OPN. An initial abnormal magnetic resonance imaging predicted conversion to MS in all 7 patients who had imaging at onset. Patients with NMO were left with significant residual visual loss distinguishing NMO from MS. In this large series of patients with CRION, nearly 50% of patients had deterioration in vision while steroids were being tapered. Long-term immunosuppression was essential for maintaining good visual outcome in both NMO and CRION. Conclusions: Optic neuritis in India appears similar to that in the West with nearly 50% developing MS in the long term.

  8. Gender differences in acute stroke: Istanbul medical school stroke registry

    Directory of Open Access Journals (Sweden)

    Nilüfer Yesilot

    2011-01-01

    Full Text Available Background : We aimed to investigate gender differences in Turkish stroke patients. Material and Methods : Demographics, risk factors, clinical and etiologic subtypes, laboratory findings, clinical course, and in-hospital prognosis of 1 522 patients with ischemic stroke (IS and 320 patients with intracerebral hemorrhage prospectively registered in the Istanbul Medical School Stroke Registry (1994-2004 were analyzed separately. Results : The mean age of IS patients was higher in females (n : 751 (P<0.0001. In males, smoking, ischemic heart disease, peripheral arterial disease, posterior circulation syndromes, and strokes due to large-artery atherosclerosis were more common (P<0.0001 for each. Prestroke disability, atrial fibrillation (P<0.0001, hypertension (P=0.041, modified Rankin Scale (mRS 3-5 at admission (P<0.0001, total anterior circulation syndrome (P<0.0001, and cardioembolic stroke (P<0.0001 were more frequent in females. Female gender was an independent predictor of poor outcome (mRS 3-6. Conclusion : Gender differences were observed exclusively in patients with IS. Although our patients were younger than those reported, gender differences were similar.

  9. Incidence of cancer in Nairobi, Kenya (2004-2008).

    Science.gov (United States)

    Korir, Anne; Okerosi, Nathan; Ronoh, Victor; Mutuma, Geoffrey; Parkin, Max

    2015-11-01

    Cancer incidence rates are presented for the Nairobi Cancer Registry, a population-based cancer registry (PBCR) covering the population of the capital city of Kenya (3.2 million inhabitants in 2009). Case finding was by active methods, with standard and checks for accuracy and validity. During the period 2004-2008 a total of 8,982 cases were registered comprising 3,889 men (an age standardized incidence rate (ASR) of 161 per 100,000) and 5,093 women (ASR 231 per 1,00,000). Prostate cancer was the most common cancer in men (ASR 40.6 per 100,000) while breast cancer was the most common among women (ASR 51.7 per 100,000). Cervical cancer ranked the second most common cancer among women in Nairobi with an ASR of 46.1 per 100,000, somewhat lower than those of other registries in East Africa region. Breast and cervical cancers accounted for 44% of all cancers in women. Cancer of the oesophagus was common in both sexes, with a slight excess of cases in men (sex ratio 1.3). Unlike other regions in East Africa, the rate of Kaposi sarcoma was relatively low during the period (men 3.6/100,000; women 2.0/100,000). Although incidence rates cannot be calculated for the early years of the registry, the increase in relative frequency of prostate cancer and declines in frequency of Kaposi sarcoma may indicate underlying trends in the risk of these cancers. PMID:26139540

  10. Renal replacement therapy in Europe: a summary of the 2011 ERA–EDTA Registry Annual Report

    Science.gov (United States)

    Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M.; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G.; Hoitsma, Andries; Ioannidis, George A.; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W.M.; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S.; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J.

    2014-01-01

    Background This article provides a summary of the 2011 ERA–EDTA Registry Annual Report (available at www.era-edta-reg.org). Methods Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and renal transplant rates in 2011. In addition, survival probabilities and expected remaining lifetimes were calculated for those registries providing individual patient data. Results The overall unadjusted incidence rate of RRT in 2011 among all registries reporting to the ERA–EDTA Registry was 117 per million population (pmp) (n = 71.631). Incidence rates varied from 24 pmp in Ukraine to 238 pmp in Turkey. The overall unadjusted prevalence of RRT for ESRD on 31 December 2011 was 692 pmp (n = 425 824). The highest prevalence was reported by Portugal (1662 pmp) and the lowest by Ukraine (131 pmp). Among all registries, a total of 22 814 renal transplantations were performed (37 pmp). The highest overall transplant rate was reported from Spain, Cantabria (81 pmp), whereas the highest rate of living donor transplants was reported from Turkey (39 pmp). For patients who started RRT between 2002 and 2006, the unadjusted 5-year patient survival on RRT was 46.8% [95% confidence interval (CI) 46.6–47.0], and on dialysis 39.3% (95% CI 39.2–39.4). The unadjusted 5-year patient survival after the first renal transplantation performed between 2002 and 2006 was 86.7% (95% CI 86.2–87.2) for kidneys from deceased donors and 94.3% (95% CI 93.6–95.0) for kidneys from living donors. PMID:25852881

  11. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries

    Directory of Open Access Journals (Sweden)

    Codreanu C

    2015-01-01

    Full Text Available Catalin O Codreanu,1 Nemanja Damjanov2 1Rheumatology Department, Center of Rheumatic Diseases, Bucharest, Romania; 2Institute of Rheumatology, School of Medicine, University of Belgrade, Belgrade, SerbiaAbstract: Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA. Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]. The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. Keywords: biologic therapy, biologic drugs, adverse events, infections, pregnancy, malignancies

  12. Improving Patient Outcomes in Gynecology: The Role of Large Data Registries and Big Data Analytics.

    Science.gov (United States)

    Erekson, Elisabeth A; Iglesia, Cheryl B

    2015-01-01

    Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver. PMID:26188310

  13. The Danish National Patient Registry: a review of content, data quality, and research potential

    OpenAIRE

    Schmidt, Morten

    2015-01-01

    Morten Schmidt,1 Sigrun Alba Johannesdottir Schmidt,1 Jakob Lynge Sandegaard,2 Vera Ehrenstein,1 Lars Pedersen,1 Henrik Toft Sørensen11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 2Department of Health Documentation, State Serum Institute, Copenhagen, DenmarkBackground: The Danish National Patient Registry (DNPR) is one of the world's oldest nationwide hospital registries and is used extensively for research. Many studies have validated algorithm...

  14. The Danish National Patient Registry: a review of content, data quality, and research potential

    OpenAIRE

    Schmidt M.; Schmidt SAJ; Sandegaard JL; Ehrenstein V; Pedersen L; Sørensen HT

    2015-01-01

    Morten Schmidt,1 Sigrun Alba Johannesdottir Schmidt,1 Jakob Lynge Sandegaard,2 Vera Ehrenstein,1 Lars Pedersen,1 Henrik Toft Sørensen11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 2Department of Health Documentation, State Serum Institute, Copenhagen, DenmarkBackground: The Danish National Patient Registry (DNPR) is one of the world's oldest nationwide hospital registries and is used extensively for research. Many studies have validated algorithms for id...

  15. The global aHUS registry: methodology and initial patient characteristics

    OpenAIRE

    Licht, Christoph; Ardissino, Gianluigi; Ariceta, Gema; Cohen, David; Cole, J Alexander; Gasteyger, Christoph; Greenbaum, Larry A.; Johnson, Sally; Ogawa, Masayo; Schaefer, Franz; Vande Walle, Johan; Frémeaux-Bacchi, Véronique

    2015-01-01

    Background: Atypical hemolytic uremic syndrome (aHUS) is a rare, genetically-mediated systemic disease most often caused by chronic, uncontrolled complement activation that leads to systemic thrombotic microangiopathy (TMA) and renal and other end-organ damage. Methods: The global aHUS Registry, initiated in April 2012, is an observational, noninterventional, multicenter registry designed to collect demographic characteristics, medical and disease history, treatment effectiveness and safety...

  16. Improving Patient Outcomes in Gynecology: The Role of Large Data Registries and Big Data Analytics.

    Science.gov (United States)

    Erekson, Elisabeth A; Iglesia, Cheryl B

    2015-01-01

    Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver.

  17. Norwegian Childhood Diabetes Registry: Childhood onset diabetes in Norway 1973-2012

    OpenAIRE

    Torild Skrivarhaug

    2013-01-01

    The Norwegian Childhood Diabetes Registry (NCDR) is a prospective, population-based, nationwide registry which systematically register all incident cases of childhood diabetes, and systematically monitors the outcome of diabetes care in children and adolescents. NCDR includes data on childhood onset diabetes since 1973, and diabetes care outcome since 2001. NCDR was founded with the following objectives: To improve the diagnostics, classifications and treatment of childhood-onset diabetes, su...

  18. Cancer risk following radiotherapy of cervical cancer: A preliminary report

    International Nuclear Information System (INIS)

    Women treated for cervical cancer were selected for study because (a) doses to body organs following radiotherapy can be accurately determined and vary sufficiently to permit dose-response evaluations, (b) organs remote from the cervix receive low-dose exposures in the range of current scientific interest, (c) treatment is relatively successful and many patients survive long enough to be at risk of late complications of radiotherapy, and (d) several nonexposed groups of women with cervical cancer are also available for comparison. In addition, population-based cancer registries provide an opportunity to inexpensively study large numbers of individuals over many decades. The careful procedures normally used by cancer registries to record second primary cancers facilitate the study of cancer incidence for which a wider view of radiation risk is expected than can be seen in investigations of mortality. Other special features of studies of cervical cancer patients include the ability to assess the effects of very large partial-body exposures, differences in organ sensitivities to radiation, interactions of radiation with biological factors such as age, and the duration of carcinogenic response

  19. Survival of patients with prostate cancer

    OpenAIRE

    Fabienne Camilo da Silveira Pirajá; Rafael Bandeira Lages; Uylma Assunção Costa; João Batista Mendes Teles; Viriato Campelo

    2013-01-01

    Objective: To analyze the survival after five years among patients treated of prostate cancer at Hospital São Marcos. Methods: A descriptive population-based epidemiological study performed in Teresina-PI, evaluating a hospital cohort consisting of 71 patients of Hospital São Marcos, enrolled in Hospital Cancer Registry (HCR) from 2000 to 2001, under ICD10 - C61. The variables considered in the evaluation of survival were: age group, tumor staging and skin color. The Kaplan-Meier method ...

  20. Systematic Reviewers in Clinical Neurology Do Not Routinely Search Clinical Trials Registries.

    Directory of Open Access Journals (Sweden)

    Philip Marcus Sinnett

    Full Text Available We examined the use of clinical trials registries in published systematic reviews and meta-analyses from clinical neurology. A review of publications between January 1, 2008 and December 31, 2014 from five neuroscience journals (Annals of Neurology, Brain, Lancet Neurology, Neurology, and The Neuroscientist was performed to identify eligible systematic reviews. The systematic reviews comprising the final sample were independently appraised to determine if clinical trials registries had been included as part of the search process. Studies acknowledging the use of a trials registry were further examined to determine whether trial data had been incorporated into the analysis. The initial search yielded 194 studies, of which 78 systematic reviews met the selection criteria. Of those, five acknowledged the use of a specific clinical trials registry: four reviewed unpublished trial data and two incorporated unpublished trial data into their results. Based on our sample of systematic reviews, there was no increase in the use of trials registries in systematic review searches over time. Few systematic reviews published in clinical neurology journals included data from relevant clinical trials registries.

  1. The importance of national registries/databases in metabolic surgery: the UK experience.

    Science.gov (United States)

    Hopkins, James; Welbourn, Richard

    2016-07-01

    The United Kingdom (UK) National Bariatric Surgery Registry (NBSR) is a registry of self-reported bariatric surgery from members of the British Obesity and Metabolic Surgery Society. We describe the registry and its usefulness and limitations in improving the knowledge base for metabolic and bariatric surgery, reviewing the main results for the first 5 years of its introduction since 2009. We also review the reports of other national and international bariatric surgery registries and compare the baseline characteristics, including metabolic parameters, of the patients entered into the NBSR. A total of 161 surgeons from 137 UK bariatric surgery units entered 32,212 anonymized patient records. Of these patients, 76% were female, mean weight at preoperative clinic was 135.6 kg, body mass index was 48.8 kg/m(2), and 76.5 % had publicly funded National Health Service treatment. The 3 most common procedures were gastric bypass (55.3%), gastric banding (20.4%), and sleeve gastrectomy (20.2%), although the prevalence of these changed over time and was different between public and private sectors. The 2-year rate for diabetes improvement was 61.5%, but this varied with the duration of diabetes and baseline diabetic therapy. The data were similar to those from other large registries. Establishment of large national registries such as the NBSR has the potential to provide "real-world" information for quality assurance and the effect of metabolic and bariatric surgery on the whole operated population. PMID:27313193

  2. Survival in patients with breast cancer with bone metastasis

    DEFF Research Database (Denmark)

    Cetin, Karynsa; Christiansen, Christian Fynbo; Sværke, Claus;

    2015-01-01

    OBJECTIVES: Since population-based data on prognostic factors affecting survival in patients with breast cancer with bone metastasis (BM) are currently limited, we conducted this nationwide retrospective cohort study to examine the prognostic role of disease stage at breast cancer diagnosis...... and length of BM-free interval (BMFI). SETTING: Denmark. PARTICIPANTS: 2427 women with a breast cancer diagnosis between 1997 and 2011 in the Danish Cancer Registry and a concurrent or subsequent BM diagnosis in the Danish National Registry of Patients. PRIMARY AND SECONDARY OUTCOME MEASURES: Survival (crude......) based on Kaplan-Meier method and mortality risk (crude and adjusted for age, year of diagnosis, estrogen receptor status and comorbidity) based on Cox proportional hazards regression analyses by stage of disease at breast cancer diagnosis and by length of BMFI (time from breast cancer to BM diagnosis...

  3. Support for immunization registries among parents of vaccinated and unvaccinated school-aged children: a case control study

    Directory of Open Access Journals (Sweden)

    Pan William KY

    2006-09-01

    Full Text Available Abstract Background Immunizations have reduced childhood vaccine preventable disease incidence by 98–100%. Continued vaccine preventable disease control depends on high immunization coverage. Immunization registries help ensure high coverage by recording childhood immunizations administered, generating reminders when immunizations are due, calculating immunization coverage and identifying pockets needing immunization services, and improving vaccine safety by reducing over-immunization and providing data for post-licensure vaccine safety studies. Despite substantial resources directed towards registry development in the U.S., only 48% of children were enrolled in a registry in 2004. Parental attitudes likely impact child participation. Consequently, the purpose of this study was to assess the attitudes of parents of vaccinated and unvaccinated school-aged children regarding: support for immunization registries; laws authorizing registries and mandating provider reporting; opt-in versus opt-out registry participation; and financial worth and responsibility of registry development and implementation. Methods A case control study of parents of 815 children exempt from school vaccination requirements and 1630 fully vaccinated children was conducted. Children were recruited from 112 elementary schools in Colorado, Massachusetts, Missouri, and Washington. Surveys administered to the parents, asked about views on registries and perceived utility and safety of vaccines. Parental views were summarized and logistic regression models compared differences between parents of exempt and vaccinated children. Results Surveys were completed by 56.1% of respondents. Fewer than 10% of parents were aware of immunization registries in their communities. Among parents aware of registries, exempt children were more likely to be enrolled (65.0% than vaccinated children (26.5% (p value = 0.01. A substantial proportion of parents of exempt children support immunization

  4. Cancer Basics

    Science.gov (United States)

    ... Cancer? Breast Cancer Colon/Rectum Cancer Lung Cancer Prostate Cancer Skin Cancer Show All Cancer Types News and Features Cancer Glossary ACS Bookstore Cancer Information Cancer Basics Cancer Prevention & Detection Signs & Symptoms of Cancer Treatments & Side Effects ...

  5. Epidemiology of cancer in Malaysia.

    Science.gov (United States)

    Lo, E K

    1985-12-01

    Some information on cancer in Malaysia are available, and its epidemiology is described. There is a need for systematic and coordinated collection of cancer statistics which are essential to patient management, cancer control programme formulation, implementation and evaluation. The decision of the Ministry of Health to introduce National Cancer Registry and to encourage epidemiological studies, which will ultimately lead to the utilization of data and introduction of control and preventive activities for cancers are positive steps in the right direction. Meanwhile, curative and palliative treatment is available from the existing hospital facilities, and preventive activities such as actions on smoking and health will be continued until such time when a comprehensive prevention and control programme for cancers in the country is evolved.

  6. [What can we learn in future from the data of the German Arthroplasty Registry (EPRD) in comparison to other registries?].

    Science.gov (United States)

    Jansson, V; Steinbrück, A; Hassenpflug, J

    2016-06-01

    The German Arthroplasty Registry (EPRD) was founded in 2010 and has been in full operation since 2014. Previous attempts at a systematic data collection of elective and non-elective knee and hip replacement in Germany failed mainly because of the long-term lack of funding. The EPRD is an interdisciplinary collaborative partnership between the German Association of Orthopedics and Orthopedic Surgery (DGOOC), all implant manufacturers of the German Medical Technology Association (BVMed), health insurers (AOK and the Association of Additional Healthcare Insurance) and hospitals (German Hospital Federation). As part of this cooperation a worldwide unique implant database has been set up, which includes all relevant components and a detailed description of implant specifications. This implant library enables a detailed evaluation of implant survival, revision rates and possible inferior implant performance of knee and hip replacements in Germany. At the end of 2015 the EPRD encompassed over 200,000 registered operations. Due to the high number of hip and knee arthroplasties in Germany with many different implants from different manufacturers there will be a rapid growth of data that are available for a national and also international comparison of the results. PMID:27160728

  7. Pregnancy after treatment of breast cancer--a population-based study on behalf of Danish Breast Cancer Cooperative Group

    DEFF Research Database (Denmark)

    Kroman, N.; Jensen, M.B.; Wohlfahrt, J.;

    2008-01-01

    after breast cancer treatment. The present study is a ten-year update. MATERIAL AND METHODS: Danish Breast Cancer Cooperative Group has since 1977 collected population-based data on tumour characteristics, treatment regimes, and follow-up status on Danish women with breast cancer. Pregnancy history was...... added from the Danish Civil Registration System, the National Birth Registry, and the National Induced Abortion registry. Cox regression was used to estimate the risk ratio of dying among women with a pregnancy after breast cancer treatment compared with women without such experience. RESULTS: In all......, 10 236 women with primary breast cancer aged 45 years or less at the time of diagnosis were followed for 95 616 person years. Among these, 371 women experienced pregnancy after treatment of breast cancer. In a multivariate analysis that included age at diagnosis, stage of disease, and pregnancy...

  8. A Comparison of Criteria to Identify Inflammatory Breast Cancer Cases from Medical Records and the Surveillance, Epidemiology and End Results Data base, 2007–2009

    OpenAIRE

    Hirko, Kelly A.; Soliman, Amr S; Banerjee, Mousumi; Ruterbusch, Julie; Harford, Joe B; Merajver, Sofia D; Schwartz, Kendra

    2013-01-01

    Inflammatory breast cancer (IBC) is a relatively rare and extremely aggressive form of breast cancer that is diagnosed clinically. Standardization of clinical diagnoses is challenging, both nationally and internationally; moreover, IBC coding definitions used by registries have changed over time. This study aimed to compare diagnostic factors of IBC reported in a U.S. Surveillance, Epidemiology, and End Results (SEER) registry to clinical criteria found in the medical records of all invasive ...

  9. Thrombosis in ovarian cancer: a case control study

    OpenAIRE

    Metcalf, R L; Fry, D J; Swindell, R.; McGurk, A; Clamp, A R; Jayson, G C; Hasan, J

    2014-01-01

    Background: Thrombotic events are common in cancer patients and have been associated with an adverse prognosis in large registry-based studies. Methods: A retrospective cohort of 417 patients with ovarian cancer treated at a tertiary cancer centre between 2006 and 2009 was studied to identify the incidence and risk factors for thrombotic events and the prognostic impact of thrombosis. Patient outcomes were evaluated against a matched control group without thrombosis. Results: Ninety-nine thro...

  10. Significant association between ABO blood group and pancreatic cancer

    Institute of Scientific and Technical Information of China (English)

    Julia; B; Greer; Mark; H; Yazer; Jay; S; Raval; M; Michael; Barmada; Randall; E; Brand; David; C; Whitcomb

    2010-01-01

    AIM:To evaluate whether the ABO blood group is related to pancreatic cancer risk in the general population of the United States.METHODS:Using the University of Pittsburgh's clinicalpancreatic cancer registry,the blood donor database from our local blood bank (Central Blood Bank),and the blood product recipient database from the regional transfusion service (Centralized Transfusion Service) in Pittsburgh,Pennsylvania,we identified 274 pancreatic cancer patients with previously determined serological ABO bloo...

  11. Conditional Survival in Patients with Advanced Pancreatic Cancer

    OpenAIRE

    Benjamin Kasenda; Annatina Bass; Dieter Koeberle; Bernhard Pestalozzi; Markus Borner; Richard Herrmann; Lorenz Jost; Andreas Lohri; Viviane Hess

    2016-01-01

    Background Cancer registry data suggest that conditional survival prognosis in patients with aggressive malignancies improves over time. We investigated conditional survival in patients with advanced pancreatic cancer. Patients and Methods In this retrospective study, we included all patients with advanced pancreatic cancer treated at four Swiss hospitals between 1994 and 2004. Main outcome was 6-month conditional survival, defined as the probability of surviving an additional 6 months condit...

  12. Regional differences in recommended cancer treatment for the elderly

    OpenAIRE

    Ho, Vivian; Ku-Goto, Meei-Hsiang; Hui ZHAO; Hoffman, Karen E.; Smith, Benjamin D.; Giordano, Sharon H.

    2016-01-01

    Background Little is known about regional variation in cancer treatment and its determinants. We compare rates of adherence to treatment guidelines for elderly patients across Texas and whether local specialist supply is an important determinant of treatment variation. Methods Previous literature reviewed indicated 7 recommended courses of treatment for colorectal, pancreatic, and prostate cancer. We analyzed Texas Cancer Registry data linked with Medicare claims for the years 2004 to 2007 to...

  13. Triptan safety during pregnancy: a Norwegian population registry study

    International Nuclear Information System (INIS)

    Knowledge on triptan safety during pregnancy remains limited to their class effect or studies on sumatriptan. Our aim was to evaluate the individual effect of four most frequently used triptans on several pregnancy outcomes. We used the Norwegian prescription database to access information on triptans redeemed by pregnant women living in Norway between 2004 and 2007. This database was linked to the Medical Birth Registry of Norway covering every institutional delivery in Norway and providing information on pregnancy, delivery, maternal and neonatal health. Estimates of associations with pregnancy outcomes were obtained by Generalised Estimation Equations analysis. Of the 181,125 women in our study, 1,465 (0.8 %) redeemed triptans during pregnancy, and 1,095 (0.6 %) redeemed triptans before pregnancy only (disease comparison group). The population comparison group comprised the remaining 178,565 women. Using this group as reference, we found no associations between triptan redemption during pregnancy and congenital malformations. Second trimester redemption was associated with postpartum haemorrhage (adjusted OR 1.57; 95 % CI 1.19–2.07). The disease comparison group had an increased risk of major congenital malformations (adjusted OR 1.48; 95 % CI 1.11–1.97), low birth weight (adjusted OR 1.39; 95 % CI 1.08–1.81), and preterm birth (adjusted OR 1.30; 95 % CI 1.06–1.60). The association of triptans with postpartum hemorrhage could be attributable to decreased platelet agreeability occurring in severe migraine. Likewise, the increased risk of major congenital malformations and other adverse pregnancy outcomes in the disease comparison group might be attributable to migraine severity

  14. Variations in Cause and Management of Atrial Fibrillation in a Prospective Registry of 15 400 Emergency Department Patients in 46 Countries The RE-LY Atrial Fibrillation Registry

    NARCIS (Netherlands)

    Oldgren, Jonas; Healey, Jeff S.; Ezekowitz, Michael; Commerford, Patrick; Avezum, Alvaro; Pais, Prem; Zhu, Jun; Jansky, Petr; Sigamani, Alben; Morillo, Carlos A.; Liu, Lisheng; Damasceno, Albertino; Grinvalds, Alex; Nakamya, Juliet; Reilly, Paul A.; Keltai, Katalin; Van Gelder, Isabelle C.; Yusufali, Afzal Hussein; Watanabe, Eiichi; Wallentin, Lars; Connolly, Stuart J.; Yusuf, Salim

    2014-01-01

    Background Atrial fibrillation (AF) is the most common sustained arrhythmia; however, little is known about patients in a primary care setting from high-, middle-, and low-income countries. Methods and Results This prospective registry enrolled patients presenting to an emergency department with AF

  15. External validation of nomograms for predicting cancer-specific mortality in penile cancer patients treated with definitive surgery

    OpenAIRE

    Yao Zhu; Wei-Jie Gu; Ding-Wei Ye; Xu-Dong Yao; Shi-Lin Zhang; Bo Dai; Hai-Liang Zhang; Yi-Jun Shen

    2014-01-01

    Using a population-based cancer registry, Thuret et al. developed 3 nomograms for estimating cancer-specific mortality in men with penile squamous cell carcinoma. In the initial cohort, only 23.0% of the patients were treated with inguinal lymphadenectomy and had pN stage. To generalize the prediction models in clinical practice, we evaluated the performance of the 3 nomograms in a series of penile cancer patients who were treated with definitive surgery. Clinicopathologic information was obt...

  16. Familial pancreatic cancer.

    Science.gov (United States)

    Klein, A P; Hruban, R H; Brune, K A; Petersen, G M; Goggins, M

    2001-01-01

    Pancreatic cancer is the fourth leading cause of cancer death in both men and women in the United States and will be responsible for an estimated 28,900 deaths in 2001. Relatively little is known of its etiology, and the only well-established risk factor is cigarette smoking. Studies over the past 3 decades have shown that 4%-16% of patients with pancreatic cancer have a family history of the disease. A small fraction of this aggregation can be accounted for in inherited cancer syndromes, including familial atypical multiple-mole melanoma, Peutz-Jeghers syndrome, hereditary breast-ovarian cancer, hereditary pancreatitis, and hereditary nonpolyposis colorectal cancer. These syndromes arise as a result of germline mutations in the BRCA2, pl6 (familial atypical multiple-mole melanoma), mismatch repair (hereditary nonpolyposis colorectal cancer), and STK11 (Peutz-Jeghers syndrome) genes. In addition, hereditary plays a role in predisposing certain patients with apparently sporadic pancreatic cancer. Many patients with pancreatic cancers caused by a germline mutation in a cancer-causing gene do not have a pedigree that is suggestive of a familial cancer syndrome. A recent prospective analysis of the pedigrees in the National Familial Pancreatic Tumor Registry found that individuals with a family history of pancreatic cancer in multiple first-degree relatives have a high risk of pancreatic cancer themselves. The identification of such high-risk individuals will help clinicians target screening programs and develop preventive interventions with the hope of reducing the mortality of pancreatic cancer in these families.

  17. The relationship between basal and squamous cell skin cancer and smoking related cancers

    Directory of Open Access Journals (Sweden)

    Sitas Freddy

    2011-12-01

    Full Text Available Abstract Background We compared the risk of being diagnosed with smoking-related cancers (lung, oral cavity, upper digestive and respiratory organs, bladder, kidney, anogenital cancers and myeloid leukaemia among people with squamous cell carcinoma (SCC or basal cell carcinoma of the skin (BCC, with risks found in the general population using data from an Australian population-based cancer registry. Methods People diagnosed with BCC or SCC in 1980-2003 reported to the Tasmanian Cancer Registry, Australia, were followed-up by linkage within the registry, until diagnosis of a subsequent smoking-related cancer, death, or until 31 December 2003. Risk of developing a future smoking-related cancer was assessed using age Standardised Incidence Ratios (SIR. Results People diagnosed with SCC had an increased risk of lung cancer (men: SIR = 1.89, 95% confidence interval: 1.61-2.21; women: SIR = 2.04, 1.42-2.83 and all other smoking-related cancers (men: SIR = 1.38, 1.19-1.60; women: SIR = 1.78, 1.34-2.33. Men with BCC had a significant increased risk of lung cancer (SIR = 1.26, 1.10-1.44 but not of any of the other smoking-related cancers (SIR = 1.09, 0.97-1.23. Conclusions Individuals with a history of SCC having an increased risk of developing smoking related cancers cancer suggests smoking as a common etiology. The relationship between BCC and smoking-related cancers is less certain.

  18. Cancer Incidence Among Those Initiating Insulin Therapy With Glargine Versus Human NPH Insulin

    OpenAIRE

    Stürmer, Til; Marquis, M. Alison; Zhou, Haibo; Meigs, James B; Lim, Soo; Blonde, Lawrence; MacDonald, Eileen; Wang, Ray; LaVange, Lisa M.; Pate, Virginia; Buse, John B.

    2013-01-01

    OBJECTIVE To add to the evidence on comparative long-term effects of insulin analog glargine versus human NPH insulin on the risk for cancer. RESEARCH DESIGN AND METHODS We identified cohorts of initiators of glargine and human NPH without an insulin prescription during the prior 19 months among patients covered by the Inovalon Medical Outcomes Research for Effectiveness and Economics Registry (MORE2 Registry) between January 2003 and December 2010. Patients were required to have a second pre...

  19. Potential of prescription registries to capture individual-level use of aspirin and other nonsteroidal anti-inflammatory drugs in Denmark: trends in utilization 1999–2012

    Directory of Open Access Journals (Sweden)

    Schmidt M

    2014-05-01

    Full Text Available Morten Schmidt,1 Jesper Hallas,2 Søren Friis1,31Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; 2Department of Clinical Pharmacology, University of Southern Denmark, Odense, Denmark; 3Danish Cancer Society Research Center, Danish Cancer Society, Copenhagen, DenmarkBackground: Due to over-the-counter availability, no consensus exists on whether adequate information on nonsteroidal anti-inflammatory drug (NSAID use can be obtained from prescription registries.Objectives: To examine utilization of aspirin and nonaspirin NSAIDs in Denmark between 1999 and 2012 and to quantify the proportion of total sales that was sold on prescription.Method: Based on nationwide data from the Danish Serum Institute and the Danish National Prescription Registry, we retrieved sales statistics for the Danish primary health care sector to calculate 1-year prevalences of prescription users of aspirin or nonaspirin NSAIDs, and to estimate the corresponding proportions of total sales dispensed on prescription.Results: Both low-dose aspirin and nonaspirin NSAIDs were commonly used in the Danish population between 1999 and 2012, particularly among elderly individuals. The 1-year prevalence of prescribed low-dose aspirin increased throughout the study period, notably among men. Nonaspirin NSAID use was frequent in all age groups above 15 years and showed a female preponderance. Overall, the prevalence of prescribed nonaspirin NSAIDs decreased moderately after 2004, but substantial variation according to NSAID subtype was observed; ibuprofen use increased, use of all newer selective cyclooxygenase-2 inhibitors nearly ceased after 2004, diclofenac use decreased by nearly 50% after 2008, and naproxen use remained stable. As of 2012, the prescribed proportion of individual-level NSAID sales was 92% for low-dose aspirin, 66% for ibuprofen, and 100% for all other NSAIDs.Conclusion: The potential for identifying NSAID use from prescription

  20. Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry.

    Science.gov (United States)

    Evangelista, Teresinha; Wood, Libby; Fernandez-Torron, Roberto; Williams, Maggie; Smith, Debbie; Lunt, Peter; Hudson, Judith; Norwood, Fiona; Orrell, Richard; Willis, Tracey; Hilton-Jones, David; Rafferty, Karen; Guglieri, Michela; Lochmüller, Hanns

    2016-07-01

    Facioscapulohumeral dystrophy (FSHD) is a rare inherited neuromuscular disease estimated to affect 1/15,000 people. Through basic research, remarkable progress has been made towards the development of targeted therapies. Patient identification, through registries or other means is essential for trial-readiness. The UK FSHD Patient Registry is a patient initiated registry that collects standardised and internationally agreed dataset of self-reported clinical details combined with professionally verified genetic information. It includes four additional questionnaires to capture patient reported outcomes related to pain, quality of life and scapular fixation. Between 2013 and 2015, 518 patients registered 243 males, 241 females with a mean age of 47.8 years. Most of the patients have FSHD type 1 (91.7 %), and weakness of the facial (59.2 %) was the most prevalent symptom at onset, followed by shoulder-girdle muscles (53.3 %) and distal (22.45 %) or proximal lower limb weakness (14.8 %). 85.57 % patients were ambulant or ambulant with assistance at the time of registration, 7.9 % report respiratory insufficiency. The registry has demonstrated utility with the recruitment of patients for a natural history study of infantile onset FSHD, and the longitudinal analysis of patient-related outcomes will provide much-needed baseline information to power future trials. The internationally agreed core dataset enables national registries to participate in a "Global FSHD registry". We suggest that the registry's ability to interoperate with other large datasets will be instrumental for sharing and exploiting data globally. PMID:27159994

  1. Cancer in British vegetarians: updated analyses of 4998 incident cancers in a cohort of 32,491 meat eaters, 8612 fish eaters, 18,298 vegetarians, and 2246 vegans 1 2 3 4

    OpenAIRE

    Key, Timothy J; Appleby, Paul N.; Crowe, Francesca L.; Bradbury, Kathryn E; Julie A Schmidt; Ruth C Travis

    2014-01-01

    Background: Vegetarian diets might affect the risk of cancer. Objective: The objective was to describe cancer incidence in vegetarians and nonvegetarians in a large sample in the United Kingdom. Design: This was a pooled analysis of 2 prospective studies including 61,647 British men and women comprising 32,491 meat eaters, 8612 fish eaters, and 20,544 vegetarians (including 2246 vegans). Cancer incidence was followed through nationwide cancer registries. Cancer risk by vegetarian status was e...

  2. Contemporary registries on P2Y12 inhibitors in patients with acute coronary syndromes in Europe: overview and methodological considerations.

    Science.gov (United States)

    Jukema, J Wouter; Lettino, Maddalena; Widimský, Petr; Danchin, Nicolas; Bardaji, Alfredo; Barrabes, Jose A; Cequier, Angel; Claeys, Marc J; De Luca, Leonardo; Dörler, Jakob; Erlinge, David; Erne, Paul; Goldstein, Patrick; Koul, Sasha M; Lemesle, Gilles; Lüscher, Thomas F; Matter, Christian M; Montalescot, Gilles; Radovanovic, Dragana; Lopez-Sendón, Jose; Tousek, Petr; Weidinger, Franz; Weston, Clive F M; Zaman, Azfar; Zeymer, Uwe

    2015-10-01

    Patient registries that document real-world clinical experience play an important role in cardiology as they complement the data from randomized controlled trials, provide valuable information on drug use and clinical outcomes, and evaluate to what extent guidelines are followed in practice. The Platelet Inhibition Registry in ACS EvalUation Study (PIRAEUS) project is an initiative of registry holders who are managing national or international registries observing patients with acute coronary syndromes (ACS). The aim of PIRAEUS is to systematically compare and combine available information/insights from various European ACS registries with a focus on P2Y12 inhibitors. The present publication introduces the 17 participating registries in a narrative and tabular form, and describes which ACS groups and which dual antiplatelet therapies were investigated. It sets the basis for upcoming publications that will focus on effectiveness and safety of the antiplatelets used. PMID:27532447

  3. The role of patient, tumour and system factors in socioeconomic inequalities in lung cancer treatment: population-based study

    OpenAIRE

    Forrest, L F; White, M.(Department of Physics, University of Adelaide, Adelaide, Australia); Rubin, G; Adams, J.

    2014-01-01

    Background: Reducing socioeconomic inequalities in lung cancer treatment may reduce survival inequalities. However, the reasons for treatment variation are unclear. Methods: Northern and Yorkshire cancer registry, Hospital Episode Statistics and lung cancer audit data sets were linked. Logistic regression was used to explore the role of stage, histology, performance status and comorbidity in socioeconomic inequalities in lung cancer treatment, for 28 733 lung cancer patients diagnosed in 2006...

  4. Study of cancer incidence among 8530 male workers in eight Norwegian plants producing ferrosilicon and silicon metal

    OpenAIRE

    Hobbesland, A.; Kjuus, H; Thelle, D S

    1999-01-01

    OBJECTIVES: To examine the association between cancer incidence, in particular incidence of lung cancer, and duration of work among employees in eight Norwegian plants producing ferrosilicon and silicon metal. METHODS: Among men first employed during 1933-91 and with at least 6 months in these plants, the incident cases of cancer during 1953-91 were obtained from The Cancer Registry of Norway. The numbers of various cancers were compared with expected figures calculated from age and cal...

  5. Socioeconomic and geographic determinants of survival of patients with digestive cancer in France

    OpenAIRE

    Dejardin, O; Remontet, L.; Bouvier, A. M.; Danzon, A.; Trétarre, B.; Delafosse, P.; Molinié, F; Maarouf, N; Velten, M; Sauleau, E.A.; Bourdon-Raverdy, N; Grosclaude, P.; Boutreux, S; de Pouvourville, G; Launoy, G

    2006-01-01

    Using a multilevel Cox model, the association between socioeconomic and geographical aggregate variables and survival was investigated in 81 268 patients with digestive tract cancer diagnosed in the years 1980–1997 and registered in 12 registries in the French Network of Cancer Registries. This association differed according to cancer site: it was clear for colon (relative risk (RR)=1.10 (1.04–1.16), 1.10 (1.04–1.16) and 1.14 (1.05–1.23), respectively, for distances to nearest reference cance...

  6. Evaluation of metrics and baselines for tracking greenhouse gas emissions trends: Recommendations for the California climate action registry

    OpenAIRE

    Price, Lynn; Murtishaw, Scott; Worrell, Ernst

    2003-01-01

    Executive Summary: The California Climate Action Registry, which was initially established in 2000 and began operation in Fall 2002, is a voluntary registry for recording annual greenhouse gas (GHG) emissions. The purpose of the Registry is to assist California businesses and organizations in their efforts to inventory and document emissions in order to establish a baseline and to document early actions to increase energy efficiency and decrease GHG emissions. The State of California has...

  7. Registro multicéntrico de las modalidades de diagnóstico, estadificación y tratamiento del cáncer de recto en la Ciudad de Buenos Aires Multicenter registry of diagnosis, staging and treatment of rectal cancer in Buenos Aires City

    Directory of Open Access Journals (Sweden)

    Ignacio Raffa

    2011-12-01

    Full Text Available El diagnóstico y tratamiento de los pacientes con cáncer de recto ha cambiado notoriamente en los últimos decenios. A fin de evaluar la conducta al respecto en nuestro medio, llevamos a cabo un estudio multicéntrico retrospectivo en 18 servicios asistenciales de la Ciudad de Buenos Aires, considerando los pacientes operados entre junio de 2004 y mayo de 2007. En 397 pacientes (mediana de edad: 63.5 años se registraron y analizaron los datos de demografía, diagnóstico, cirugía, morbimortalidad, patología, radioterapia y quimioterapia consignados en la historia clínica. Constaba el "TNM" en 253 (estadio I: 23.7%, II: 32.8%, III: 39.5%. Se realizó resonancia nuclear magnética de pelvis en 44 (11.1%. Recibieron neoadyuvancia 115 (29%. Se efectuó resección anterior en 170 (42.8%, resección ultrabaja en 95 (23.9%, amputación abdominoperineal en 76 (19.1%. Faltaron datos sobre la escisión del mesorrecto en 135 (34.0%. La mediana de ganglios linfáticos resecados fue de 13; con metástasis: 3. El margen circunferencial de resección se informó en 219 (55.2%. Se empleó quimioterapia en 123 (31%. Se presentaron en Comité de Tumores 98 (24.7% del total. La confrontación de estos resultados con los estándares internacionales muestra una morbimortalidad quirúrgica adecuada a esos estándares, al tiempo que demuestra que fue insuficiente la discusión interdisciplinaria, reducido el empleo de resonancia nuclear magnética para la estadificación, baja la utilización de neoadyuvancia y escasa la mención del tipo de resección mesorrectal efectuada. Este estudio sugiere la conveniencia de una adopción más generalizada de las pautas internacionales y la necesidad de una acción educativa en tal sentido.Diagnosis and treatment of patients with rectal cancer has changed dramatically in recent decades. In order to assess the approach in this regard in Argentina we conducted a multicenter retrospective study in 18 health care services in

  8. Cancer estimation of incidence and survival in Algeria 2014

    Directory of Open Access Journals (Sweden)

    Hamdi Cherif M

    2015-10-01

    Full Text Available Cancer is one of the major public health problems in Algeria. In the last 25 years, a significant increase in the incidence of the major types of cancers has been observed in both sexes. Moreover, the 5-year survival rate is low for the severe tumors due to a difficulty in access to cancer care and an incomplete health care framework. Cancer Registry of Setif, Algeria, has been recording cancer incidence, mortality, and survival since 1986 in collaboration with International Agency for Research on Cancer (IARC of Lyon. Cancer Registry of Setif is being a source of information for cancer planning and corresponding surveillance in the National Cancer Plan 2015-2019, starting in January 2015. Data is recorded by means of CanReg 5 software. This software is developed and provided by the International Agency for Research on Cancer (IARC of Lyon. It is designed specifically for cancer registration, and standardized to capture, control, and process the data. Estimation of cancer incidence in Algeria and survival rates are very important for surveillance, control, and planning of care. In men the incidence of lung, colorectal, bladder, prostate, and laryngeal cancers has significantly and steadily increased in the last decade. In women, the incidence of breast, colorectal, thyroid, and lung cancers has also increased significantly in the same period. Five-year survival rates for cancer of the stomach, colon, rectum, liver, lung, breast, cervix, ovary, and prostate in adults, and childhood leukemia are relatively low compared with other countries. The aim of our study was to estimate incidence and survival by means of Setif cancer registry data.

  9. A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality, and Complications of Fertility Preservation Strategies in Australia and New Zealand.

    Science.gov (United States)

    Anazodo, Antoinette C; Stern, Catharyn J; McLachlan, Robert I; Gerstl, Brigitte; Agresta, Franca; Cohn, Richard J; Jayasinghe, Yasmin; Wakefield, Claire E; Daly, Genevieve; Chan, Daisy; Gilbert, Lorrae; Kemertzis, Matthew; Orme, Lisa M; Wand, Handan; Viney, Rosalie; Gillam, Lynn; Deans, Rebecca; Jetti, Murali; Wu, John; Chapman, Michael; Ledger, William; Sullivan, Elizabeth A

    2016-09-01

    Improvements in cancer diagnosis and treatment in patients of a reproductive age have led to significant improvements in survival rates; however, a patient's fertility can be affected by both cancer and its treatment. As survival rates improve, there is an expectation by clinicians and patients that patient's reproductive potential should be considered and protected as much as possible. However, there is a lack of data about current fertility preservation (FP) uptake as well as accurate data on the acute or permanent reproductive risks of cancer treatment, complications of FP in cancer patients, and the use and success of assisted reproductive technology by cancer survivors. FP remains a major gap in acute cancer management with lifelong implications for cancer survivors. The FUTuRE Fertility research team has established the first binational multisite Australasian Oncofertility Registry, which is collecting a complete oncofertility data set from cancer and fertility centers in Australia and New Zealand. Outcomes from the research study will monitor referral, uptake, and complications of FP, document patient's reproductive potential after treatment, and collect data on the use of assisted reproductive technology following cancer treatment. The data will be linked to other routine health and administrative data sets to allow for other research projects to be carried out. The changes in oncofertility care will be benchmarked against the Australasian Oncofertility Charter. The data will be used to develop evidence-based guidelines and resources, including development of accurate risk projections for patients' risk of infertility, allowing clinicians to make recommendations for FP or assisted reproductive technology. Australian New Zealand Clinical Trials Number-12615000221550.

  10. Domestic Radon and Childhood Cancer in Denmark

    DEFF Research Database (Denmark)

    Raaschou-Nielsen, Ole; Andersen, Claus Erik; Andersen, Helle P.;

    2008-01-01

    Background: Higher incidence rates of childhood cancer and particularly leukemia have been observed in regions with higher radon levels, but case-control studies have given inconsistent results. We tested the hypothesis that domestic radon exposure increases the risk for childhood cancer. Methods......: We identified 2400 incident cases of leukemia, central nervous system tumor, and malignant lymphoma diagnosed in children between 1968 and 1994 in the Danish Cancer Registry. Control children (n = 6697) were selected from the Danish Central Population Registry. Radon levels in residences of children...... and the cumulated exposure of each child were calculated as the product of exposure level and time, for each address occupied during childhood. Results: Cumulative radon exposure was associated with risk for acute lymphoblastic leukemia (ALL), with rate ratios of 1.21 (95% confidence interval = 0...

  11. INSIST-ED: Italian Society of Andrology registry on penile prosthesis surgery. First data analysis

    Directory of Open Access Journals (Sweden)

    Edoardo Pescatori

    2016-07-01

    Full Text Available Objectives: The Italian Society of Andrology, i.e. “Società Italiana di Andrologia” (S.I.A., launched on December 2014 a prospective, multicenter, monitored and internal review board approved Registry for penile implants, the “INSIST-ED” (Italian Nationwide Systematic Inventarisation of Surgical Treatment for ED Registry. Purpose of this first report is to present a baseline data analysis of the characteristics of penile implant surgery in Italy. Material and methods: The INSIST-ED Registry is open to all surgeons implanting penile prostheses (all brands, all models in Italy, providing anonymous patient, device, surgical procedure, outcome, follow-up data, for both first and revision surgeries. A Registry project Board overviews all the steps of the project, and a Registry Monitor interacts with the Registry implanting surgeons. Results: As by April 8, 2016, 31 implanting surgeons actively joined the Registry, entering 367 surgical procedures in its database, that comprise: 310 first implants, 43 prosthesis substitutions, 14 device explants without substitution. Implanted devices account for: 288 three-component devices (81,3%, 20 two-component devices (5,4%, 45 non-hydraulic devices (12,3%. Leading primary ED etiologies in first implant surgeries resulted: former radical pelvic surgery in 111 cases (35,8%, Peyronie’s disease in 66 cases (21,3%, diabetes in 39 cases (12,6%. Two intraoperative complications have been recorded. Main reasons for 57 revision surgeries were: device failure (52,6%, erosion (19,3%, infection (12,3%, patient dissatisfaction (10,5%. Surgical settings for patients undergoing a first penile implant were: public hospitals in 251 cases (81%, private environments in 59 cases (19%. Conclusions: The INSIST-ED Registry represents the first European experience of penile prosthesis Registry. This baseline data analysis shows that: three-pieces inflatable prosthesis is the most implanted device, leading etiology of

  12. Tools and data services registry: a community effort to document bioinformatics resources.

    Science.gov (United States)

    Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé; Kalaš, Matúš; Rydza, Emil; Chmura, Piotr; Anthon, Christian; Beard, Niall; Berka, Karel; Bolser, Dan; Booth, Tim; Bretaudeau, Anthony; Brezovsky, Jan; Casadio, Rita; Cesareni, Gianni; Coppens, Frederik; Cornell, Michael; Cuccuru, Gianmauro; Davidsen, Kristian; Vedova, Gianluca Della; Dogan, Tunca; Doppelt-Azeroual, Olivia; Emery, Laura; Gasteiger, Elisabeth; Gatter, Thomas; Goldberg, Tatyana; Grosjean, Marie; Grüning, Björn; Helmer-Citterich, Manuela; Ienasescu, Hans; Ioannidis, Vassilios; Jespersen, Martin Closter; Jimenez, Rafael; Juty, Nick; Juvan, Peter; Koch, Maximilian; Laibe, Camille; Li, Jing-Woei; Licata, Luana; Mareuil, Fabien; Mičetić, Ivan; Friborg, Rune Møllegaard; Moretti, Sebastien; Morris, Chris; Möller, Steffen; Nenadic, Aleksandra; Peterson, Hedi; Profiti, Giuseppe; Rice, Peter; Romano, Paolo; Roncaglia, Paola; Saidi, Rabie; Schafferhans, Andrea; Schwämmle, Veit; Smith, Callum; Sperotto, Maria Maddalena; Stockinger, Heinz; Vařeková, Radka Svobodová; Tosatto, Silvio C E; de la Torre, Victor; Uva, Paolo; Via, Allegra; Yachdav, Guy; Zambelli, Federico; Vriend, Gert; Rost, Burkhard; Parkinson, Helen; Løngreen, Peter; Brunak, Søren

    2016-01-01

    Life sciences are yielding huge data sets that underpin scientific discoveries fundamental to improvement in human health, agriculture and the environment. In support of these discoveries, a plethora of databases and tools are deployed, in technically complex and diverse implementations, across a spectrum of scientific disciplines. The corpus of documentation of these resources is fragmented across the Web, with much redundancy, and has lacked a common standard of information. The outcome is that scientists must often struggle to find, understand, compare and use the best resources for the task at hand.Here we present a community-driven curation effort, supported by ELIXIR-the European infrastructure for biological information-that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners.As of November 2015, the registry includes 1785 resources, with depositions from 126 individual registrations including 52 institutional providers and 74 individuals. With community support, the registry can become a standard for dissemination of information about bioinformatics resources: we welcome everyone to join us in this common endeavour. The registry is freely available at https://bio.tools. PMID:26538599

  13. Evaluation and Use of Registry Data in a GIS Analysis of Diabetes

    Directory of Open Access Journals (Sweden)

    Mungrue Kameel

    2015-07-01

    Full Text Available Objectives: to evaluate registry data routinely collected by the Chronic Disease Electronic Management System (CDEMS in the monitoring of type 2 diabetes mellitus (T2DM in the Eastern half of the island and use the data to describe the spatial epidemiological patterns of T2DM. Design and Method: The starting point was access and retrival of all exsisting data on the diabetes registry. This data was subsequently validated using handwritten medical records. Several clinical indicators were selected to evaluate the registry. The address of each patient was extracted and georeferenced using ArcGIS 10.0 and several maps were created. Results: The registry had data for thirteen (13 out of the sixteen (16 health facilities. We found that less than 15 percent of all patients actually had diabetic indicator tests done according to World Health Organization (WHO standards. The overall prevalence of T2DM was 20.8 per 1000 population. The highest prevalence of diabetes occurred at the northeastern tip of the island. In addition 57.58% of patients with T2DM resided inland and 40.75% of patients residing on the coastal areas. Conclusions: In conclusion, we provide evidence that the data collected by the diabetes registry although lacking in many areas was adequate for spatial epidemiological analysis.

  14. Evaluation of participant recruitment methods to a rare disease online registry.

    Science.gov (United States)

    Johnson, Kimberly J; Mueller, Nancy L; Williams, Katherine; Gutmann, David H

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. PMID:24700441

  15. Spatio-temporal analysis of female breast cancer incidence in Shenzhen, 2007–2012

    OpenAIRE

    Zhou, Hai-Bin; Liu, Sheng-Yuan; Lei, Lin; Chen, Zhong-Wei; Peng, Ji; Yang, Ying-Zhou; Liu, Xiao-li

    2015-01-01

    Introduction Breast cancer is a leading tumor with a high mortality in women. This study examined the spatio-temporal distribution of the incidence of female breast cancer in Shenzhen between 2007 and 2012. Methods The data on breast cancer incidence were obtained from the Shenzhen Cancer Registry System. To describe the temporal trend, the average annual percentage change (AAPC) was analyzed using a joinpoint regression model. Spatial autocorrelation and a retrospective spatio-temporal scan ...

  16. BRCA sequencing and large rearrangement testing in young Black women with breast cancer

    OpenAIRE

    Pal, Tuya; Bonner, Devon; Cragun, Deborah; Johnson, Sharland; Akbari, Mohammad; Servais, Lily; Narod, Steven; Vadaparampil, Susan

    2013-01-01

    Young Black women in the United States are disproportionately afflicted with breast cancer, a proportion of which may be due to BRCA1 and BRCA2 (BRCA) gene mutations. In a cancer registry-based sample of young Black women with breast cancer, we evaluated: (1) the prevalence of BRCA mutations detected through full gene sequencing and large rearrangements testing and (2) proportions that accessed genetic services pre-dating study enrollment. Black women diagnosed with invasive breast cancer ≤ag...

  17. Cancer risk in Swedish women: the relation to size at birth

    OpenAIRE

    Andersson, S W; Bengtsson, C; Hallberg, L.; Lapidus, L; Niklasson, A; Wallgren, A; Hulthén, L

    2001-01-01

    The relationship between fetal growth as indicated by weight and length at birth, and cancer risk in 1080 adult Swedish women was examined. Birth factors were retrieved from original midwife records for the years 1914, 1918, 1922 and 1930, and primary cancer cases were identified by matching with national and regional cancer registries through the year 1998. A positive and statistically significant increased risk for cancer was found with increasing birth weight or birth length for all site c...

  18. Prospective surveillance of women with a family history of breast cancer: auditing the risk threshold

    OpenAIRE

    Anderson, E.; Berg, J; Black, R; Bradshaw, N.; Campbell, J.; Carnaghan, H; Cetnarkyj, R; Drummond, S; Davidson, R; Dunlop, J.; Fordyce, A.; Gibbons, B; Goudie, D; Gregory, H; Holloway, S

    2008-01-01

    To evaluate current guidelines criteria for inclusion of women in special ‘breast cancer family history' surveillance programmes, records were reviewed of women referred to Scottish breast cancer family clinics between January 1994 and December 2003 but discharged as at ‘less than ‘moderate' familial risk'. The Scottish Cancer Registry was then interrogated to determine subsequent age-specific incidence of breast cancer in this cohort and corresponding Scottish population figures. Among 2074 ...

  19. Childhood cancer and nuclear power plants in Switzerland: a census-based cohort study

    OpenAIRE

    Spycher, Ben D.; Feller, Martin; Zwahlen, Marcel; Röösli, Martin; von der Weid, Nicolas X.; Hengartner, Heinz; Egger, Matthias; Kuehni, Claudia E.

    2011-01-01

    BACKGROUND: Previous studies on childhood cancer and nuclear power plants (NPPs) produced conflicting results. We used a cohort approach to examine whether residence near NPPs was associated with leukaemia or any childhood cancer in Switzerland. METHODS: We computed person-years at risk for children aged 0-15 years born in Switzerland from 1985 to 2009, based on the Swiss censuses 1990 and 2000 and identified cancer cases from the Swiss Childhood Cancer Registry. We geo-coded place...

  20. Uncertain added value of Global Trigger Tool for monitoring of patient safety in cancer care

    DEFF Research Database (Denmark)

    Lipczak, Henriette; Neckelmann, Kirsten; Steding-Jessen, Marianne;

    2011-01-01

    Monitoring patient safety is a challenging task. The lack of a golden standard has contributed to the recommendation and introduction of several methods. In 2000 the Danish Lung Cancer Registry (DLCR) was established to monitor the clinical management of lung cancer. In 2008 the Global Trigger Tool...